Annual Activity Report 2010 Romanian Prader Willi Association ...

Annual Activity Report 2010 Romanian Prader Willi Association Annual Activity Report 2010 Romanian Prader Willi Association Annual Activity Report 2010 Romanian Prader Willi Association

At the end of a year full of events and 

challenges, in which RPWA grew and became 

more professional, I can honestly state that 

this year was the year in which the 

RPWA team was created, learnt to 

communicate and build together. 

Message 2010 

Since the very beginning of our activities to 

promote information about rare diseases, 

we have found open and efficient partners 

and collaborators, truly needed in such a 

complex field. 

As an organisation, we have created a 

positive image at European and international 

level, we are appreciated for our work and 

this helps us go forward. World known 

specialists are by our side and we thank 

them very much. 

We learn every day how to “defeat” a 

disease, convincing ourselves and those 

beside us that it is worth fighting. All 

those surrounding us and encouraging us 

are most certainly special (RARE) people 

because they help us conquer each day. 

We learnt it takes courage to be yourself 

and to not live life by reacting to what 

people like or dislike... 

We want to thank all those who helped us 

turn this dream into reality because without 

their support, this would not have been 

possible! 

„Do not be worried that your path is different 

than the others’! 

It takes courage to be yourself and 

to not live life by reacting to what people like or 

dislike. 

Be brave and follow your heart! 

You must follow your own unique path, 

to honour yourself and 

to fulfil your spiritual goal. 

If the meaning of your like troubles other people, 

then they should not share this 

journey with you. 

If this is how things stand, do not be disappointed! 

When other choose to leave – this usually happens 

Because they need to do in a different direction, 

To honour themselves!” 

Lessons for Life - Paul Ferrini 

 

Annual Activity Report 2010 | Romanian Prader Willi Association

Mission 

RPWA VISION is a world in which people 

affected by rare diseases have real chances of 

diagnosis and treatment, offering them opportunities 

for community integration. 

RPWA MISSION is to increase the quality of life 

for people affected by Prader Willi Syndrome 

and other rare diseases. 

General objectives 

1. to facilitate access to information about 

rare diseases; 

2. to create a national data base on rare 

diseases; 

3. to create a support network between patients 

affected by the same disease; 

4. to create a support network between specialists 

and families; 

5. to stimulate research in the field of managing 

rare diseases; 

6. to collaborate with international organizations 

and networks; 

7. to stimulate early diagnosis; 

8. to prevent and manage disability at different 

levels 

We work at 

Community level 

• through public awareness campaigns; 

• through information campaigns about 

disabilities caused by rare diseases – risk 

of occurrence and prevention and limitation 

methods (i.e. neonatal screening); 

• through advocacy campaigns on developing 

a national strategy regarding rare 

diseases; 

Group level 

• Training, information 

and counselling for patients 

through support 

groups; 

• Training and information 

for specialists 

involved in managing 

rare diseases 

individual 

level 

• individual 

information 

and counselling 

for 

patients 

and/or 

families. 

Beneficiaries of our services 

• people affected by rare diseases in Romania; 

• families of rare disease patients; 

• specialists involved in the diagnosis and management of these diseases. 

We chose this target group as we wish to provide adequate and efficient services, by involving 

those who reflect the beneficiaries’ voices (NGO, patients, families, specialists), as experts in 

defining their own wishes and needs. 


RPWA team 

Our team was shaped in time, through the 

passion for our work and a better of the needs 

currently existing in the social, medical and 

educational services field, necessary for our 

beneficiaries. 

Our team has members as diverse as the 

problems they must approach. We have people 

with brilliant ideas, people able to motivate, 

people who create and maintain hope, who 

listen to patients’ problems with empathy, 

people who build well structured strategies to 

ease the suffering of those around us and 

to develop services necessary for rare disease 

patients. 

But they are all animated by the same wish 

– to tell the story of “rare people and rare 

diseases”, to energetically and enthusiastically 

call upon all those to wish and are able to 

become involved in improving the life of 

people. 

Arion Camelia: In times of ongoing changes, we 

managed to demonstrate that ordinary people 

obtain extraordinary results when they gather 

together around certain values and follow the 

same goal. Their enthusiasm and commitment, 

alongside their availability to learn, to evolve 

and to collaborate, shaped the beautiful story 

known as NoRo. 

Băican Cosmina: Ever since I have been part 

of RPWA team, I have learned that it is important 

to do our work with passion and commitment, 

to believe in what we do and the results 

achieved so far are an impulse to keep going! 

Brazdău Maria: I have learned, worked and had 

success alongside those we represent. 

Breban Florica: It is extremely pleasant to work 

in an association such as RPWA, fighting for 

the good of those affected by rare diseases, 

together with a young team that works so 

well and hard in an environment based on 

friendship and mutual support. 

Dan Dorica: 2010 has been the year to strengthen 

the RPWA team. I believe that RPWA members 

are our ambassadors which is why we 

should treat them as such – for their role 

within the team and the message they convey 

to the community. 

Dan Oana: “The difference between school and 

life? In school, you learn a lesson, and then 

you give a test. In life, you’re given a test 

that teaches you a lesson.” In this year I tried 

to do what I had learned and I had good colleagues. 

Dan Tiberiu: “The best way to appreciate your 

job is to imagine what it’s like without one.” 

Oscar Wilde 

I do not know how I’d imagine 2010 without 

the daily “stress” related to the construction 

of the Pilot Center … I would repeat any time 

over again and I do not regret anything… it 

 


was an exceptional year and we had exceptional 

collaborators. 

Darko Emese: This has been a special experience 

for me, I gained new knowledge, I met 

wonderful people and I discovered the path I 

wish to follow together with the RPWA team. 

Dombi Istvan: After a deep scan I can say 

we have an exceptional 1.0 Alpha team, functioning 

perfectly, without any errors and on 

any type of system. Although we have often 

been threatened by viruses, Trojans and other 

spam ware, we never gave up and continued 

to run our programmes successfully. If possible, 

I would copy and paste year 2010 directly 

onto year 2011. 

Fazacaş Mihaiela: 2010 has been an intense 

year. Now, when the time has come to draw 

the line, I am glad to be part of a simulative 

and dynamic team, I am happy that through 

my work I was able to contribute towards 

bringing a ray of hope in the life of patients 

with rare diseases. 

Gafencu Mihai: As a doctor in a university centre, 

I always knew that Transylvania schools 

produced hardworking people, but I have never 

even passed through Zalau by train until 2005. 

Constructive envy is what I feel when I see 

the achievements in Salaj County. My absence 

in the Northern Transylvania area has been 

solved by the RPWA team, who made me regularly 

visit their oasis of normality in the harsh 

world of medicine and social issues of our 

country, maybe because the initiative started 

from within a family. Being a smiling person 

by nature, I have felt nothing but happiness 

working with you, and I hope our collaboration 

is a model to be replicated in the same smiley 

way. 

Lazar Zsuzsa: The energy given by colleagues 

is one of the most important elements for 

professional success. This team taught me to 

never give up and continue with a smile on 

my face. 

Marincaş Nelu: Until now I was only used with 

the more dry language of numbers, but along 

with my entry in the RPWA team I have discovered 

a new valence of daily activity, which 

is working within a team. The main strength 

is the enthusiasm of youth, and for that the 

Annual Activity Report 2010 | Romanian Prader Willi Association 

team has my appreciation and respect. 

Porumb Darius: A Chinese saying mentions: 

“Behind a capable person there are always 

other capable persons” – this is the truth which 

lies behind the RPWA great achievements. 

Rotaru Ioana: My collaboration with the RPWA 

team meant reintroducing in my human and 

professional experience dictionary words like: 

collaborations, support, team spirit, generosity. 

Sabău Amalia: Year 2020 spent as part of the 

RPWA team represented for me an ongoing 

challenge. The numerous and diverse activities 

developed, the large volume of work, deadlines 

– all these marked by my wish to do everything 

as well as possible, sometimes caused a 

lot of headache for me. But the courage of the 

patients who shared with me their experience 

of having a rare disease and their hope gave 

me strength to persevere and keep fighting, 

together with my colleagues, in order to turn 

our dream into reality – the dream to increase 

the quality of life for rare disease patients and 

their integration in the community! 

Skrypnyk Cristina: An extraordinary opportunity 

to come close to rare disease patients 

and their families, to understand them and to 

understand each other. A special lesson about 

the meaning of team spirit, patience, cooperation, 

serious work done with pleasure. Thank 

you all for the honour to work together to 

build something sustainable! 

Szekely Aurelia: I believe one of the greatest 

achievements of RPWA in 2010 was the 

close collaboration and the strengthening of 

the team, which expanded and colleagues got 

to know each other better and to collaborate 

efficiently on the ongoing projects. 

The volunteering activities this year had a significant 

contribution to the expansions and diversification 

of our services, especially those 

related to the integration in the community 

of disabled children and youth. The volunteers 

were involved in socialisation programmes, 

such as “Big Brother Big Sister” (BBBS), the 

Special Olympics, the Summer Camp in Bobald 

and other events. 

For sharing their spare time with us with a 

warm heart and passion, we wish to thank all 

BBBS volunteers!

Projects

Norwegian – Romanian Partnership (NoRo) for 

Progress in Rare Diseases 

Project objectives 

Through collaboration and cooperation 

between the Health Ministry and services 

of: Diagnosis (UMF and SRGM), information 

and training (Information centre for 

Rare Genetic Diseases, UMF and SRGM), 

treatment (ACASA Foundation), training and 

individualised therapy (Information centre 

for Rare Genetic Diseases) and by involving 

the local authorities and the Church, 

following the example of our excellent 

partners from Norway - Frambu Rare 

Disease Center and Norwegian Prader Willi 

Association. 

Objective 1 – Training and developing a national taskforce for rare diseases 

• Quarterly member meetings, to assess needs 

and set priorities; 

• Development of curricula for various training 

courses; 


• Monitoring the implementation of the 

Romanian National Plan for Rare Diseases, 

assessing needs and setting priorities. 

Objective 2 – Developing new services for rare diseases in Romania 

Developing and implementing a training Developing an accredited online course 

network for specialists and staff involved 

in the diagnosis, treatment and reha 

diseases, for specialists: social workers, 

(eUniversity) in the field of rare 

bilitation of rare disease patients. psychologists, medical nurses, teachers, 

• Organising workshops, seminars and training doctors, etc. 

courses in specific fields related to rare • Developing a curricula for specific training 

diseases; 

themes; 

• Selecting a team of trainers; 

• Purchasing the necessary software for holding 

these courses; 

• Developing a curricula for specific occupations 

in the field of rare diseases, i.e. genetics • Organising the first training course; 

counsellor; 

• Organising video conference3s on specific 

• Providing training courses. 

themes related to rare diseases.

Pilot Centre for Rare Diseases 

Residential component 

• To provide support to families, after the 

experience of being diagnosed with a rare 

disease; 

• A place where various ways of coping 

with the new situation and the diseases 

can be learned, in the everyday life; 

• A place where meetings and courses for 

patients can be organised; 

• Support groups and counselling activities 

for patients and families. 

Hospitalisation of rare disease patients 

in ACASA Rehabilitation Hospital (ACASA, 

together with RPWA, is a founding member 

of the Romanian national Alliance for Rare 

Diseases) 

• Creating a data base of patients requiring 

rehabilitation programmes at ACASA; 

• Developing specialised services for rare 

disease patients in the new centre: 

physical rehabilitation, weight management, 

individualised therapeutic approach. 

Day care 

• Individualised therapeutic approach of rare 

diseases; 

• Behaviour therapy; 

• Occupational therapy; 

• Educational activities; 

• Leisure activities; 

• Weight management; 

• Support groups and counselling activities. 

The value of the project is 1,974,138 euros, of 

which 1,874,138 euros will be received from the 

Norwegian Cooperation Program. The Romanian 

Ministry of Health will contribute 80,000 euros, 

Salaj County Council will contribute 8,000 euros 

and the Romanian Prader Willi Association 

12,000 euros (from the ROAD Foundation). 

Zalau Local Council contributed the lease for 

the land and the building where the Pilot 

Reference Center will be created. 

 


”Big Brother Big Sister” Project 

The activities of the “Big 

Brother Big Sister” project, 

initiated on January 1st 2007 

by the Romanian Prader Willi 

Association in partnership 

with Zalau Local Council 

– Community Social Work 

Department (project funder), 

School Centre for Inclusive 

Education “Speranta” Zalau, 

Pedagogical Highschool 

Gheorghe Sincai Zalau, ACASA 

Foundation and the Orthodox 

Theological Seminary “Sfintii Trei 

Ierarhi” Zalau continued in 2010. 

By promoting the “education for all” principles 

and by trying to utilise the resources existing 

at community level, the BBBS project is a 

true means of interaction, specialisation and 

community integration for disabled children, as 

well as a means of social responsibility for 

highschool students in Zalau, the volunteers in 

this project. 

The general objective of the project is to 

improve the quality of life for disables children 

through socialisation activities organised to 

facilitate their social integration. 

Among the 2010 activities which contributed to 

achieving this objective are: fitness activities 

made possible thanks to Mr. Petre Seutea; 

Christmas Fair in “Ioan Sima” Galleries where 

we exhibited Christmas cards and decorations 

made by the children in the project; 2010 

Rare Disease Day Campaign; Special Olympics 

and previous trainings; visits to the Aghires 

Equitation Club; the summer camp in Bobald, 

organised in partnership with Werdnig 


– Hoffman Association from Carei; weekly 

melotherapy activities; Christmas Party and 

other children – volunteers joint activities. 

Generally speaking, the project represents an 

investment in human resources, having an 

echo in the souls of all those involved. The 

irrefutable proof of the project success is the 

children looking forward to the next planned 

activity, their enthusiasm, total involvement 

and joy written all over their faces when they 

are together with their older “brothers” and 

‘sisters”. 

All of us contributing to the implementation of 

this project in 2010 proved, once again, that it 

is possible to mobilise community resources in 

order to socially integrate disabled people and 

that together we can build a better society 

in which values such as – unconditioned 

acceptance of those near us, altruism, 

collaboration and last, but not least, love for 

those near us – rule.

Correlation of clinical, 

genetic and epigenetic 

aspects implicated in 

the aetiology of Prader 

Willi/Angelman syndromes: 

model of multidisciplinary 

approach for rare 

diseases in Romania 

The Romanian Prader Willi Association participated 

as partner in a research project funded by THE 

NATIONAL PROGRAMMES MANAGEMENT CENTRE 

– CNMP, programme 4 – Partnerships in priority fields, 

implemented between October 2008 – September 2011. 

Project partners 

• Children’s Emergency Clinical Hospital “Louis Turcanu” Timisoara 

• Bucharest University 

• National Institute of Virusology “Stefan Nicolau” Bucharest 

• University of Medicine and Pharmacy “T. Popa” Iasi 

• University of Medicine and Pharmacy “I. Hateganu” Cluj-Napoca 

• Romanian Prader Willi Association 

• National Institute of Endocrinology “C. I. Parhon” Bucharest 

Project aim 

The integrated multidisciplinary investigation of 

Prader Willi and Angelman syndromes, genetic 

diseases with complex diagnosis, treatment 

and care issues. 

Trough nationwide partners, the project ensures 

the clinical, genetic and epigenetic studies in 

these diseases, establishing a standard scheme 

for early diagnosis and a better practice in 

the health and social systems for PWS/AS 

patients. 

The project team includes well-known 

specialists from Timisoara, Bucharest, Iasi and 

Cluj university centre. The Project Coordinator 

is the University of Medicine and Pharmacy 

“Victor Babes” Timisoara, Conf. Dr. Maria Puiu 

being the Project Director. 

Through this partnership between universities, 

research institutes, hospitals and an NGO – the 

Romanian Prader Willi Association, our purpose 

is to develop a multidisciplinary investigation 

model of rare diseases in Romania. 

10 Annual Activity Report 2010 | Romanian Prader Willi Association

Accredited social 

assistance services 

The accredited social services provided by 

RPWA – “Information and counselling on rare 

diseases” and “Specific intervention for autistic 

children” targeted the disability prevention and 

management at different levels: individual, 

group, community and national. 

The direct beneficiaries of our services were: 

people affected by rare diseases in Romania 

and their families, autistic children or children 

diagnosed with other development deficiencies, 

children diagnosed with mental deficiency with 

autistic elements from Salaj County and their 

families. 

In 2010, both services benefited from subsidies 

received based on Law 34/1998 from the Ministry 

of Labor, Family and Social Protection. 

Information and counselling on rare genetic diseases 

The information and counselling service on 

rare genetic diseases has been functioning 

since 2005, accredited as a social service ever 

since the first year of functioning. In 2010, the 

beneficiaries of the activities developed within 

this service were: 

• 240 beneficiaries in the Helpline system, 

benefitting from information and counselling 

regarding the management of rare diseases, 

from information about the diagnostic, 

referral to existing social and medical 

services or other specialists who can provide 

support; 

• 57 rare disease patients benefited from 

information and counselling, information 

about the diagnostic, referral to existing 

social and medical services or other 

specialists who can provide support via 

NoRo project; 

• 350 rare disease patients and over 250 

specialists received information throughout 

the year, during the various events organised 

by RPWA. 

Annual Activity Report 2010 | Romanian Prader Willi Association 11

The types of information requested and provided 

to the project beneficiaries throughout 2010 

are: information about the disease, about the 

medical and social services they can access, 

national and European legislation for rare disease 

patients, practical information about caring for 

disabled people, legal information, information 

about other services and programmes existing 

in the community etc. 

This service also refers rare disease patients 

to other structures within the community or 

country for the purpose of: evaluation, genetic 

testing and counselling, accessing recuperation 

and rehabilitation treatment and / or educational 

and socialisation activities. 

On a monthly basis, the magazine “Rare 

People and Rare Diseases” has been issued, 

with the purpose to provide information about 

rare diseases in Romania. This magazine is 

developed by also involving beneficiaries and 

families. 

The information activity has been implemented 

during all events organised by RPWA or 

attended by RPWA throughout 2010. 

The counselling activity purpose is to increase 

the social integration of rare disease patients 

in Romania and provision of the psychological 

support necessary for surpassing existing 

psychological and social barriers. A psychologist 

and a social worker have implemented this 

activity in 2010, addressing both people with 

disabilities caused by rare diseases and their 

families. 

We also organized support groups for patients 

with rare diseases and different for parents 

of children with autism from the personalized 

intervention program. 

Specific intervention for autistic children 

In 2010, as part of the Specific intervention for autistic children service accredited 

through the Accreditation Certificate series A no. 0008162 issued on 17.11.2008, 

therapeutic activities continued to be implemented for autistic children. 

The stages in this programme are: 

• Complex assessment of the child; 

• Establishment of an individualised programme, focusing 

on developing and strengthening social and self-care 

skills, language, cognitive and motor skills; 

• Behavioural therapy based on the Antecedent – Behaviour 

– Consequence model to learn imitation, communication 

and language, socialisation and play (during therapy, 

individual activities with the therapist are supplemented 

by the child’s development of independent work skills); 

• Behaviour modification (to reduce unadapted 

behaviour). 

The service capacity is 20 children. This maximum number 

has been reached by September 2010 and all subsequent 

requests have been included on a list until the opening of 

the NoRo centre. 

The parents of children benefiting from this service have 

been included in support group activities, where they 

shared experiences and discussed various issues raised by 

them or by specialists. 


Events & activities 


Events and activities 

organised by RPWA 

Info kiosks 

January 2010 

Big Brother Big Sister (BBBS) 

activity-at Corneliu Coposu School 

20 January, 2010, Zalau 

Children and youth with disabilities, beneficiaries 

of the “Big Brother Big Sister” programme, 

attended a joint activity organised in the 

Festive Hall of the Secondary School “Corneliu 

Coposu”. 

Two Info kiosks purchased in the project 

“Norwegian Romanian Partnership for progress 

in rare diseases”, funded by the Norwegian 

Cooperation Programme were located, one in 

Zalau, inside the City Hall and another inside the 

Children Hospital “Louis Turcanu” of Timisoara. 

They provide all those interested information 

about rare diseases, treatments and about the 

project NoRo and the Romanian Prader Willi 

Association. 

Children were involved in different activities, 

depending on their need and interests in 

development and social networking. Thus a 

playground was organized, have been emerged 

two parallel routes for the relay competition; 

was formed a circle of chairs needed to 

carry out social activities and relaxation and 

organized workspace items for children with 

autism, beneficiaries of the project. 

All the activities had as main objective 

relaxation, facilitating interaction between 

children / young people with disabilities and 

volunteers and, last but not least, increasing 

group cohesion. 


Fitness activities in 

“Big Brother Big Sister” project 

January 21, 2010, Zalau 

Meeting of the National Committee 

for Rare Diseases and of the NoRo 

International Advisory Committee 

29 - 30 January 2010, Bucharest 

The meetings focused on establishing the 

activities to be undertaken for the 2010 

Campaign for Rare Disease Day. The theme 

for 2010 was: “Rare Diseases a public health 

priority” with a focus on research needs and 

the slogan was: “Healthy and sick, partners 

for life”. Discussions also took place regarding 

ways in which services will be organised at the 

new centre for patients and families. 

The aim of fitness activities was to give 

children the chance to relax, to socialize and 

to improve the physical state through sports 

activities. 

SC Marathon Ltd., through Mr. Peter Seutea, 

provided us the fitness room twice a week. 

For this activity we formed three groups: 

children attending APWR behavioural therapy, 

children from the School for Inclusive Education 

Speranta, and youth from the Center for 

Integration through Occupational Therapy 

(CITO). BBBS volunteers, teachers from the 

School for Inclusive Education Speranta and 

RPWA team attended this activity as well. 

PlayDecide 

February 13, 2010, Zalău 

The APWR team organized the PlayDecide 

game on neonatal screening. Game instructions, 

game cards, game board and other details can 

be found on the http://www.playdecide.eu. 

Goals of the game:: 

• To clarify your views 

• To facilitate discussions among participants 

• Try to compromise with other group 

members 

• Make your voice heard in Europe 

The game consists of three phases: an 

information (clarifying opinions about the topic, 

reading and choosing cards that seem most 


elevant), a discussion (on proposed theme, 

with cards of problems) and a final phase 

of reflecting and reaching consensus, thus 

formulating a group response. 

Lessons on rare diseases 

February 15 - March 15, 2010 

To speak about rare diseases and disabilities 

when the children are still in school banks in 

search of their identity, facilitates assimilation 

of traits such as tolerance and acceptance of 

diversity in future adult personality structure. 

Such lessons were held in Sălaj, Timiş, 

Mehedinţi and Bacău counties. Over 1 000 

children attended. Activities were completed 

by a contest with the theme “Living with a 

rare disease”, a competition in which students 

participated with essays or drawings. 

BBBS volunteer working meeting 

February 16, 2010, Zalau 

The main purpose was to prepare a series 

of organizational details for the smooth 

development of the National Campaign for 

Rare Disease Day activities from Zalau. 

Volunteers were informed of planned activities 

to take place locally and the human resources 

needs were analysed. Responsibilities were 

distributed and each volunteer chose, according 

to interests and skills, activities in which to 

engage and respond to their completion. 

The work meeting ended by establishing the 

final details and with the volunteers’ promise 

to mobilise as many classmates and friends as 

possible to attend the rare Disease March and 

the show launching the Campaign. 

March of Rare Diseases and 

Festivity at the House of Unions 

- Rare Disease Day Campaign 

Launch at Zalau 

February 22, 2010, Zalău 

Over 300 young people from Salaj attended the 

March of Rare Disease, with signs on which 

different names of rare diseases were listed. 

They were accompanied by fanfare music and 

cheerleading groups. The march was organized 

to raise awareness on rare diseases and 

problems faced by people affected by them. 


The festivity at the Cultural House of Unions 

had a nice atmosphere with music and dance 

moments, but also presentation of plays with 

themes related to rare diseases. 

Conference for Family Doctors on 

Neuro-Muscular Diseases – Zalau 


The Romanian Prader Willi Association held a 

conference for family doctors in partnership 

with ACASA Foundation and the Doctors 

Colegium Salaj, with the financial support of 

Genzyme. 

Launch of the book of stories - 

“Together in the world innocence” 


The launch of the book: “Together in the world 

innocence”, authors: Flower Horincar, teacher 

at Middle School “Corneliu Coposu” Zalau and 

Theresa Stoica, a teacher at Middle School 

“Aurelia and Lazar Cosma” Treznea, both 

voluntaries of the association, took place at 

the “Avram Iancu” Hall in Zalau City hall. 

The drawings were made by Stefan Dan, an 

artist with hearing and speech impairment. 

The theme was rare neuromuscular diseases; 

how to identify them and how to assure quality 

care to their patients. The conference brought 

together 110 doctors. 

The book contains ten stories to capture 

beautifully illustrated scenes from school life. 

The short texts captivate the reader and lead 

to meditation. In each story we meet a child 

who is different from others, misunderstood, 

rejected and eventually accepted. 


Advisory Committee eUniversity 

(Noro) 

February 25, 2010, Bucharest 

Monitoring visit of the project 

“Norwegian-Romanian Partnership 

for Progress in rare diseases” 

March 18, 2010, Zalau 

Project supervisors Anne Lise Rognlidalen 

and Randi Alkem Andresen came to Zalau, 

to discuss the implementation stage of the 

project “Norwegian-Romanian Partnership for 

Progress in rare diseases” the potential risks, 

opportunities for prevention and sustainability. 

On February 25 we held a meeting of the 

Advisory Committee for eUniversity. After the 

January meeting held in Oradea on the same 

subject, we determined the needs related to 

this service. At this meeting with Mr. David 

Oziel – EURORDIS and Orphanet consultant we 

wanted to define the structure and analyze 

the administrative component of this new 

educational system. 

Live appearance on TVR 1 - 

News and Theme of the Day 

February 26, 2010 

On the evening of February 26, 2010 in “Theme 

of the Day” program on TVR1, rare diseases 

were presented, starting from the story of Maria 

who died at the end of the year 2009 due to 

too late diagnosis of Prader Willi Syndrome and 

complications from the disease. “She was a 

child until the age of 28, when she took off to 

heaven. But it was a miracle that she remained 

this long among the people. We are talking 

about Maria, who could have had a chance for 

a better life if the doctors would have made 

the correct diagnosis in childhood: no one knew 

she had a rare disease until it was too late.“ On 

the “Theme of the Day” the situation of rare 

diseases in our country was discussed. Dorica 

Dan, president of the National Alliance for Rare 

Diseases, and Dr. Razvan Chivu counsellor of 

Minister of Health on health programs were 

present in the studio. 

The conclusions related to the results of the 

monitoring visit were very positive. 

Support group for parents 

March 24, 2010, Zalau 

Wednesday, 24.03.2010 the first meeting 

of the support group was held for parents 

whose children participate in personalized 

therapy. Although the number of participants 

was small, they were delighted about the 

initiative of RPWA professionals to give them 

the opportunity to share to each other the 

experiences regarding their special children. 

The meeting was moderated by a social worker 

and a psychologist. The discussions were 

directed to talk about the children of those 

present. Each parent was encouraged to talk 

about events in the life of the child, sharing 

both pleasant and unpleasant experiences. Thus, 

they were able to open their hearts, to feel 

understood, being in similar situations, to learn 

from each other and to receive psychological 

support and the support of others. 


eUniversity - Training in Norway 

April 11-14, 2010, Norway 

The exchange of experience in the Norwegian 

Centre for Integrates Care and Telemedicine 

Tromso aimed at improving knowledge on 

methods of distance delivery of social and 

medical services, and of trainings in order to 

use these information in the development of 

the e-University www.edubolirare.ro. 

Objectives: 

1. Improving training competences using the 

Internet platform 

2. Knowledge of examples and successful 

practices in social assistance, primary and 

specialty medical care at a distance (using 

Internet technology). 

RDD essay awards 

April 15, 2010, Zalau 

On April 15, 2010, RPWA organized the festivity 

of awarding the winners of the creative contest 

“Living with a rare disease”, a competition 

organized during the Rare Disease Day 

campaign. Winners from preschool, primary 

or secondary school have been rewarded for 

their work: essays, compositions, poems or 

drawings. To strengthen the knowledge gained 

during the campaign, the ceremony began 

with a conversation about rare diseases, all 

participants demonstrating that lessons and 

workshops about rare diseases have achieved 

the desired goal: information and awareness 

about the existence of rare diseases and 

deficiencies associated with them. 

Develop and implement quality 

management system 


Romanian Prader Willi Association began in 

April 2010 the development and implementation 

of quality management system according to 

standard SR EN ISO 9001:2008 for the following 

activities: Information and counselling in rare 

diseases; Personalized therapy for children 

affected by diseases from autistic spectrum; 

Training specialists and personal assistants; 

Virtual university; Respite care services. 

For this we started a collaboration with the 

representatives of SC Greens SRL, assisting us 

throughout the evaluation, system development 

and implementation process. 

“Time Zero” - event to start 

the construction work at the 

Pilot Reference Centre for Rare 

Diseases 


On April 19, 2010, in the presence of local and 

county officials, and project partners, Romanian 

Prader Willi Association (RPWA) started the 

construction work of the first Pilot Reference 

Centre for Rare Diseases in Romania. 


The investment of building the Centre is part of 

the project Norwegian - Romanian Partnership 

for Progress in Rare Diseases, with the main 

goal to improve the quality of life of people 

affected by these diseases in Romania, through 

equal access to early diagnosis, treatment and 

quality rehabilitation services in complex and 

available networks of resources and facilities as 

described in the National Plan Rare Diseases. 

This is an important step in treating patients 

with rare diseases. 

Visit to the Botanical Garden 

– Patient group at ACASA 

Foundation 

April 24, 2010, Jibou 

On the morning of April 24, a group of 

children, young people and parents undergoing 

treatment and recuperation and ACASA 

Hospital, accompanied by Dr, Ioana Rotaru 

and members of the RPWA team, visited the 

Botanical Garden of Jibou. 

The beautiful weather and the beauty of the 

Botanical Garden fascinated everybody. 

A few hours of relaxation, joy, sensory 

stimulation and chatting helped everybody 

forget, at least for a while, the hospital and 

the rare disease. 

BBBS activity - preparation for 

Special Olympics 

April 28, 2010, Zalău 

On April 28, the sports field at “C. Coposu” 

Middle School, which hosted several events in 

the project” Big Brother Big Sister”, was full 

of cheerfulness and good mood. Children and 

youth with disabilities, direct beneficiaries of 

the project trained alongside their Big Brothers 

/ Sisters - volunteers of RPWA, students 

from partner high schools - for the sports 

competitions “Special Olympics”. 

The activities began with a series of exercises 

followed by a series of mini-competitions with 

the ball and free activities (football, ping pong, 

adapted bowling). 

The end of activity found them all tired, some 

were happy because they won others a bit sad 

because they have lost. Even so, team spirit, 

cooperation and mutual help were dominant. 

The game itself and the time spent together 

were the most important. 

The event was organized by RPWA team, with 

the support and involvement of four teachers 

from CSEI “Speranţa” Zalau. 

Meeting of the National 

Committee for Rare Diseases 

April 30 - May 1, 2010, Iasi 

Between April 30 and May 1 we organized the 

Meeting of the National Committee for Rare 

Diseases in Iasi. The purpose of the meeting 


was to update the NoRo project, the National 

Plan for Rare Diseases and preparation for the 

Europlan Conference. 

We presented the results to the eUniversity 

team visit to Norway - University of Tromso. 

It was an important experience, beneficial to 

the future development of the project. 

Methods of completing the questionnaires 

for assessing the quality of life of patients 

affected by rare diseases were analyzed, in 

order to have a substantial number of subjects 

for an interim evaluation and presentation of 

partial results at the Europlan Conference. 

Patient groups at ACASA 

Foundation 

May-June 2010, Zalau 

In May 2010, a group of 10 patients was 

hosted at Acasa Foundation - 8 adults with 

multiple sclerosis and two children with Prader 

Willi syndrome and Wilson´s disease. In early 

June 2010 another group was welcomed - 8 

patients - 5 adults with MS and three children 

with phenylketonuria, Down syndrome and 

Angelman syndrome. 

Daily, specialists – a psychologist and a social 

worker -from the RPWA team met with 

patients in support groups and individually, 

organising individual therapy sessions, socioeducational 

and leisure activities. One of the 

wishes of the group was that at next return 

they would like to see the same people in the 

group (if possible), because of the friendships 

they made and which are a real support both 

during and after the hospitalization. 

Support group for parents 

June 29, 2010, Zalău 

The third meeting of the support group for 

parents whose children participate in the 

activities of personalized therapy took place 

Tuesday, 29th of June 2010. The meeting was 

focused on the theme: “The announcement of 

the child´s diagnosis”, and was attended by 

seven parents and two moderators (a social 

worker and a psychologist). 

We used a personal approach of the topic 

introduced at the beginning of the meeting, 

each parent sharing their experience about 

finding out the diagnosis of their child was, 

difficulties in accepting the disability and in 

finding solutions for the recovery and treatment 

to be followed. 

Parents have shared information and listened 

to each other and gave advice to those who 

are at the beginning of the journey dealing 

with their child’s disease. 

Trip to Aghires and horseback 

riding 

July 6, 2010, Aghireş 

On the morning of July 6th, a lively group consisting 

of children who attend behavioural therapy, 

their parents and siblings, and RPWA personnel 

enjoyed a trip to the Aghires Equity Club. 

Horse riding is not only a sport but also a therapy 

combining movement (development of motion 

skills, tonification of muscles, and improvement 

of posture) and relaxation with love for animals, 

sensory and verbal communication with the 

animal. If development of motion skills is a 

long term process, relaxation, love for animals 

and the wish to communicate with them can 

be instantly noticed. 

While the children were exploring the surroundings, 

petting and feeding the ponies and riding 

horses with the help of instructor, parents 

had the opportunity to share experiences and 

emotions, to internalize new ways of solving 

problems based on positive experiences of 

others. 


Training course in autistic 

children therapy 

11-19 July 2010, Zalau 

The greatest surprise was for them to find 

articles they signed in the magazine “Rare 

People and Rare Diseases”. 

We made plans for the activities to be organised 

at the Bobald summer camp, we analysed 

together actions that should be taken to 

succeed in developing an efficient rare disease 

national strategy and we organised an outing 

to Moneasa. 

Horseback rising adventures 

(continued) 

August 12, Aghires 

A group of specialists from USA, consisting of 

Valerie Grumwald – school psychologist, Michelle 

Miller – special education teacher, Linda Gilles 

Jirbes – occupational therapist, shared with us 

the knowledge and practical experience gained 

over the 20 years of working with children 

diagnosed with autism, ADHD, behavioural and 

mental deficiencies. 

This exchange of experience gave us the 

opportunity to optimise our practice in 

developing therapy activities, to debate topics 

on various themes, to find together answers to 

our questions and to learn new and constructive 

things in our professional development. 

Rehabilitation treatment at 

Dezna Hospital 

19-30 July, Dezna 

We benefited from treatment and rehabilitation 

at Dezna Hospital in Arad County, a place where 

we have been meeting every summer patients 

from all over the country, RPWA members who 

have been receiving treatment here for many 

years. We have created here the first support 

groups, we made friends for life. 

Because good things deserve to be continued, 

August was the perfect moment for another 

horseback riding adventure. Enjoying the fresh 

air outside the city, children ran, pretended to 

drive a truck or a carriage, fed the horses and 

the ponies and admired the blue feathers of 

peacocks. But as usual, the main attraction 

was riding the ponies and taking the carriage. 

Taking turns, each child enjoyed the relaxing 

yet energising moments of hippotherapy. 

During this time, supported by the RPWA 

team, the parents exchanged impressions and 

experiences, strengthening the already existing 

support group. 

Meeting of the National Committee 

for Rare Diseases 

September 25, Timisoara 

During “The III-rd Congress of Medical Genetics”, 

organised in Timisoara by the Romanian Society 


of Medical Genetics in partnership with the 

Romanian Prader Willi Association, the 25th 

of September was dedicated to the meeting 

of the National Committee for Rare Diseases 

(CNBR). 

This work meeting was also joined by 

specialists in Medical Genetics from Romania 

and abroad, patients affected by various rare 

diseases, family members and students from 

“Victor Babes” University in Timisoara. 

Unfortunately, discussions revealed the absence 

of decision makers and family doctors – whose 

presence would have been extremely important 

give that they represent the interface with the 

patients. 

The agenda contained the following: 

• A presentation of the development stage 

of Orphanet Romania website – Dr. Cristina 

Rusu; 

• A presentation of the NoRo project and 

Romanian National Plan for Rare Diseases 

implementation stage – Dorica Dan, RPWA 

President; 

• A presentation regarding the usefulness of 

telemedicine in the management of rare 

diseases – Dr. Mihai Gafencu; 

• A presentation of the Muscular Dystrophy 

Register – R. Isabela Tudorache. 

The end of the meeting focused on a debate 

on “Ways to work together to improve the life 

of rare disease patients” initiated by Dorica 

Dan. This section allowed parents and patients 

present in the room to interact with specialists 

and ask for clarifications regarding resources 

and alternatives at their disposal in the unfair 

fight against the disease. 

Meeting with the volunteers 

October 5, Zalau 

On October 5th 2010, the RPWA headquarters 

hosted the first meeting of the Big Brother 

Big Sister volunteers in 2010-2011 school year. 

The meeting agenda consisted of organising 

and establishing future activities in the BBBS 

project. 

The volunteers were presented their 

volunteering contract, the job description and 

the tasks and responsibilities. 

Meeting of Advisory Committee 

October 28, Zalau 

Prior to the East European Conference on 

Prader Willi Syndrome, we organised a meeting 

of the Advisory Committee, attended by world 

known specialists involved in managing rare 

diseases. 

The main purpose of the meeting was to 

analyse the implementation stage of the project 

“Norwegian – Romanian (NoRo) Partnership for 

progress in rare diseases” and ways in which 

services will be developed after finalising the 

project implementation. 


Second East European Conference 

on Prader Willi Syndrome 

29-30 October, Zalau 

133 participants for 8 European countries 

attended the Second East European Conference 

on Prader Willi Syndrome organised at Grand 

Hotel Severus in Zalau, between October 29- 

30. The event was organised by the Romanian 

Prader Willi Association in partnership with the 

International Prader Willi Syndrome Organisation, 

the Norwegian Prader Willi Association, Frambu 

Centre for Rare Diseases and the University of 

Medicine and Pharmacy Timisoara. The daily 

management of Prader Willi Syndrome patients 

was the main conference topic. 

Group of patients at ACASA Foundation 

October 29 – November 17, Zalau 

Based on the partnership agreement between 

the Romanian Prader Willi Association and 

ACASA Recuperation Hospital, a group of 8 

children diagnosed with Prader Willi and Bardet 

Biedl Syndromes benefited from rehabilitation 

services provided within the hospital. The 

activities started with the parents’ participation 

to the Second East European Conference on 

Prader Willi Syndrome organised in Zalau 

October 29-30. While parents attended the 

conference, children and volunteers from “Save 

the Children!” Timisoara played together. 

In the days following the conference, children 

attended group counselling, educational, 

socialisation and leisure activities organised by 

Amalia Sabau – psychologist while the parents 

received the professional support of Darius 

Porumb – social worker. 

The numerous and diverse activities contributed 

towards establishing a cohesive group. Together 

and supported when needed, the children – 

Timotei, Fabiana, Ionela,, Mădă, Maria, Oana 

– worked in pairs or as a team, learning to 

adequately express emotions, verbalise their 

needs, increase their autonomy in relation with 

the parent. Through games, art therapy and 

Although it was an Eastern European conference, 

the participants were mainly Romanian and 

from Western Europe. It seems like Eastern 

Europe is not yet completely aware of this 

problem and how important it is to learn from 

the experience of others. 

The conference focused on the following 

aspects of disease management: news 

regarding Prader Willi Syndrome, treatment 

with growth hormones, national strategies, 

genetic, epigenetic, endocrinologic, neurological, 

psychiatric, orthopaedic, paediatric, educational 

and behavioural issues, weight management, 

social services and transition to adulthood of 

Prader Willi patients, best practice and research 

exchanges. An activity for Prader Willi patients 

was organised in partnership with a team of 

volunteers from “Save the children” Timisoara. 

ergotherapy, the learned new things and, as a 

conclusion to all activities, the children created 

a frame for a group photo with FRIENDS at 

ACASA. 


Workshop on “Inclusive 

Education Notions” 

November 11, Zalau 

The Romanian Prader Willi Association in 

partnership with School “Corneliu Coposu” Zalau 

organised on November 11, a Workshop on 

“Inclusive Education Notions”. 36 teachers from 

the school and their guests from “Dumbrava 

Minunata” Kindergarten debated together with 

our specialists Cosmina Băican, Emese Darkó, 

Mihaiela Fazacaş and Darius Porumb topics 

such as: rare diseases, school integration 

of autistic children, work strategies in class 

for ADHD children. Theoretical models were 

presented, and experience and best practice 

models were shared. 

and development of the course for Prader Willi 

patients and the teleconference on the same 

topic with specialists involved in the disease 

management. 

On this occasion, participants were presented 

the 5 training courses provided by RPWA (socioeducational 

animator, art therapist, rehabilitation 

therapist, professional competences evaluator, 

personal assistant for people with severe 

disabilities). This workshop will be followed next 

year by other training activities for teachers in 

Salaj County, on inclusive education. 

Working visit to FRAMBU – 

Norway 

November 15-19, Oslo 

PFour of the RPWA team attended in 15-19 

November 2010 an experience exchange at the 

FRAMBU Centre for Rare Diseases in Norway. 

During the visit, they observed the organisation 

They received information about the general 

organisation of activities at FRAMBU, the 

training courses, documentation and research 

activities related to rare diseases and the 

Rehabilitation Centre Nordre Aasen was visited 

where a patient spend 7 weeks to develop skills 

such as eating, communication and mobility. 

We want to thank our partners for this 

experience and for the very useful model 

which greatly helps the development of our 

services. 

Melotherapy 

November – December, Zalau 

The preparation stages before melotherapy 

(music therapy) implied a meeting with the 

volunteers of the “Big Brother Big Sister” 

project, taking place on November 4 at the 

RPWA headquarters. The purpose of the 

meeting was to explain the volunteers the 

benefits of melotherapy and to bring examples 

of specific activities, so that they can have 

an idea about melotherapy. Volunteers 

were receptive and showed interest both in 

melotherapy and the children’s diagnosis, their 

needs and difficulties. 


Let’s be better for Christmas! 

December 19, Zalau 

On December 19 2010, the Romanian Prader 

Willi Association, in partnership with the 

Association “Sports for All” Salaj organised 

the activity “Let’s be better for Christmas!” 

at “Corneliu Coposu” School. 30 children 

attended the activity, supported by volunteers 

and enjoying sport, games, dances and carols 

together. 

Children were divided in two groups, each 

group supported by 4 volunteers. Until the 

winter holidays, each group met twice, Group I 

on November 25 and December 9 and Group II 

on December 2 and December 16. 

By the end of the competition, both teams 

ended up on the 1st place and participants 

received their awards from Santa Claus 

himself. 

Promising to return the next year as well, Santa 

left with his heart full of joy, after listening to 

the children’s carols and poems. Santa, as well 

as all those present, realised how important 

it is to bring a smile on the faces of children 

who are going through such hardships in life. 


Events and activities organised in 

collaboration with other organisations 

“Story of the week, My Story” 

- Stories written by patients or 

professionals about RD 

February 2010 

From the first day of February, the National 

Alliance for Rare Diseases launched the 

National Campaign “Healthy and Sick, Partners 

for Life” to celebrate the International Day of 

Rare Diseases, officially marked in the last day 

of February. 

We started by promoting weekly series of 

stories about patients with rare diseases in 

Romania and those who care for them: parents, 

professionals, educators, colleagues, etc. 

We believe it is necessary to be known by the 

general public because they are true heroes. 

Life with a rare disease or with a person living 

such a life is a constant struggle for survival. 

First life gave them the test and only then told 

them what the lesson actually was about. 

Ability Workshop - RPWA and 

CARITAS - School Corneliu Coposu 

February 17 - 18, 2010, Zalau 

10 classes from “Corneliu Coposu” School 

Zalau (approximately 200 students) attended 

on February 17, 2010 the ability workshops 

organized in partnership with Romanian Prader 

Willi Association and Caritas Catolica. 

In this workshop, students learned about rare 

diseases and their associated disabilities in 

an interactive and fun (game) manner which 

facilitates social integration. Students were 

made to solve various simple tasks (solving a 

puzzle, identify different smells, reading simple 

text, moving among obstacles, etc.) while 

simulating different disabilities. 

The work was completed by writing essays 

with the theme “Living with a rare disease”. 

The best essays were awarded and published in 

the magazine Rare People and Rare Diseases. 

“Healthy and sick – 

Partners for life” 

Bucureşti, 26 februarie 2010 

On the morning of February 26, a press 

conference was organised, attended by Dr. 

Răzvan Chivu advisor to the Ministry of Health, 

who stated that this year´s national program 

on rare diseases will continue with at least 

at the same budget as in 2009 and that the 

screening program will be generalized. 

After that, the event continued presenting the 

conference organised by the Romanian National 

Alliance for Rare Diseases in partnership 

with the National Centre for Family Medicine 

Studies. 

Council Recommendation adopted on June 8, 

2009 calls for joint action in the field of rare 

diseases focusing on European and national 

level and has the following objectives: ensuring 


appropriate coding and classification of rare 

diseases, increase research into rare diseases 

identified by the Reference Centres and their 

inclusion in the European Reference Networks, 

support consolidation of expertise at European 

level. 

In recent years, several Member States have 

developed National Plans for Rare Diseases. 

The National Alliance for Rare Diseases in 

Romania is working on completion of the plan 

and on the proposal for its inclusion in the 

National Strategy for Public Health. 

Special Olympics 

1st of June, Zalău 

1st of June was celebrated by children in 

the project “Big Brother Big Sister” as well. 

Together with volunteers, they attended the 

fifth edition of the Special Olympics for people 

with disabilities. The event, organized by 

Sports Department Salaj, General Directorate 

of Social Assistance and Child Protection 

Salaj, Community Welfare Department Zalau, 

Romanian Prader Willi Association, The Catholic 

Caritas - CICPD Zalau Rehabilitation Centre, 

Treatment and Care ACASA was held in the 

former school gym Meses Zalau. 

The participants, children and youth with 

disabilities, recipients of services provided by 

Complexes Community Services from Cehu 

Silvaniei and Simleul Silvaniei, Centre for 

Inclusive Education School “Speranta” Zalau, 

Centre for Inclusive Education School of 

Şimleu Silvaniei, various NGOs specialized in 

the county and the Emergency Social Centre, 

enjoyed the sport exercises prepared by the 

organizers - athletics, basketball - individual 

skills, tennis and double the range, and 

have proved much fair play conduct during 

the entire event. Before and during breaks, 

employees of the Foundation “ACASA”, from 

DGASPC and volunteer teachers animated 

participants, offering them a series of fun and 

energizing games, which have developed a 

sense of cohesion, promoted collaboration and 

teamwork, bringing happiness on the faces of 

those present. 

The end of the competition was marked by 

the award ceremony, in which all participants 

received medals and diplomas from the Special 

Olympics Romania and Basque with inscriptions 

from RPWA. At each institution was handed a 

cup by Sports Department Salaj. 

But the best moment was circle formation, 

already known as symbol of the Special 

Olympics, in which all those present contributed 

by shaking hands and they felt how together 

contributed to the conduct of an event, evidence 

of humanity, unconditional acceptance and love 

of neighbour. 

Europlan Conference 

June, 18-19, 2010, Bucharest 


EUROPLAN Conference held in Bucharest, 

between 18 and 19 of June 2010, in partnership 

with the Ministry of Health, under the auspices 

of the Health Committee of the Chamber of 

Deputies, by ANBRaRo - National Alliance for 

Rare Diseases in Romania, SRGM - Romanian 

Society of Medical Genetics, Orphanet Romania 

and University of Medicine and Pharmacy 

Timisoara, adopted the following resolution: 

1.3 million of Romanians suffering from a rare 

disease in their lifetime! 

Rare diseases are a threat to the health of 

EU citizens to the extent that they endanger 

the life or can cause a chronic disability, with 

a low prevalence and high complexity. Despite 

their rarity, there are so many different types 

of rare diseases that millions of people are 

affected. 

Romania should develop and adopt, as soon 

as possible, and preferably no later than the 

end of 2013, a plan or a strategy aimed at 

guiding and structuring the relevant actions 

in the field of rare diseases in the health and 

social systems. 

In order to develop the National Plan for Rare 

Diseases in Romania, the Ministry of Public 

Health and the National Alliance for Rare 

Diseases Romania (ANBRaRo) have agreed a 

partnership. 

The National Plan for Rare Diseases has the 

following objectives: 

• Ensure proper institutional framework for 

the development of prevention, diagnosis, 

treatment and rehabilitation of patients 

with rare diseases and the development of 

regional reference centres; 

• Creation of Registries for Rare Diseases; 

• Implementation of screening programs 

- to avoid late diagnosis and therefore, 

complications and high costs of subsequent 

treatment. 

Improve services provided to patients with 

rare diseases by: 

• Improving access to information about these 

diseases (including the establishment of a 

website: www.bolirare.ms.ro) 

• Development of continuous service / cross, 

diagnosis / treatment / rehabilitation for 

patients with rare diseases; 

• Ensuring access to medicines, foods medicine, 

assistive devices and compensation costs; 

• Stimulating research on rare diseases; 

• Development of human resources involved 

in the diagnosis and management of rare 

diseases. 

Europlan partners requests from The Ministry 

of Health the following: 

• Inclusion of National Plan for Rare Diseases 

- NPRD in the National Public Health; 

• Include NPRD provisions in the normative 

acts which will be drafted by the Ministry 

• Create a joint working group composed 

of experts from the Ministry of Health, 

specialists and patients, which aim to 

implement the PNBR principles, as they 

result from the Recommendation of Europe 

Council. 

NPRD inclusion in the National Public Health 

will increase the quality of life for patients 

with rare diseases and economic efficiency of 

the health system. 

Summer camp in Bobald, 

between “5 dream days” and 

“7 days in Paradise” 

23-30 August, Bobald 

This is the second year in which, at the initiative 

of Werdnig Hoffman Association in partnership 

with the Romanian Prader Willi Association a 

camp is organised in Bobald for youth with 

disabilities produced by rare diseases. 


I was one of beneficiaries this year. It is known 

that for organising such an activity, it takes a 

lot of volunteer work and money. 

The activities initiated by two associations’ 

volunteers and therapists in the camp focused 

on different approach – that of informal 

education, education through games and 

adventures, combining joy and learning. This 

camp was made possible by the collaboration 

and implication of the two associations, but 

also thanks to sponsors and volunteers who 

made these days to be dream days. We wish 

to thank them for all their support. 

Different, yet the same! 

November 18, Zalau 

The project focusing on inclusive education 

“Different, yet the same!” was launched in 

November 18 2010, at “Dumbrava Minunata” 

Kindergarten, during the Salaj County Education 

Days. 

There are five institutions and organisations 

collaborating in the implementation of this 

project: School Centre for Inclusive Education 

“Speranta” Zalau, “Dumbrava Minunata” 

Kindergarten Zalau, “Mihai Eminescu” School 

Zalau, Popeni School and the Romanian Prader 

Willi Association, wishing to build a society ruled 

by key values such as tolerance, solidarity, and 

people living together and helping each other. 

The project purpose is to increase the level 

of inclusion for children with disabilities, by 

developing acceptance, understanding and 

support skills in pupils and students. 

PlayDecide with students 

December 4, Timisoara 

In the two classrooms of the Children Clinical 

Emergency Hospital “Louis Turcanu” Timisoara, 

Prof. DR. Maria Puiu together with volunteers 

from Save the Children organisation Timis 

and from the Romanian National Alliance for 

Rare Diseases, alongside collaborators of the 

Romanian Prader Willi Association, a PlayDecide 

game was organised regarding rare diseases. 

The topics discussed were Neonatal screening 

and Diagnosis, patient information and genetic 

counselling. 

Four teams were created, consisting of 27 

players, 4 moderators and 3 observers – medical 

geneticists. Among the participants, there was 

a young man diagnosed with haemophilia, who 

was happy to attend the game. 

The games were well organised, the participant 

getting actively involved and contributing to 

setting the conclusions of the topics discussed. 

Show at the Union House Zalau 

December 12, Zalau 

On December 12, a charity show was organised 

by the Social Democrat Youth Zalau at the 

Unions House for rare disease children. 

Folk artists were invited to sing songs – Columna 

Choir and the Orthodox Theological Seminary 

Choir. The entrance was free and the amount 

collected from donations – 3 000 lei will be used 

for organising a therapeutic weekend for autistic 

children included in the personalised intervention 

programme developed by the Romanian Prader 

Willi Association specialists. 


Events we attended 

• Opening Conference of the 2010 European 

Year for Fighting against Poverty and Social 

Exclusion, 18-19 February 2010, Bucharest – 

organised by the Ministry of Labour, Family 

and Social Solidarity 

• Workshop on “Rare Genetic Diseases: 

Patients’ Access to Diagnosis and Treatment” 

– February 26, 2010, Cluj Napoca – organised 

by the Children’s Clinical Emergency 

Hospital Cluj; Centre for Genetic Pathology, 

Paediatrics I Department; Medical Genetics 

– Biochemistry Department from University 

of Medicine and Pharmacy “Iuliu Hatieganu” 

Cluj Napoca and last, but not least, the 

Academy of Medical Sciences Romania – 

Cluj Branch 

• National Forum of Patients Associations – 

March 5 – 7, 2010, Bucharest – organised by 

the Coalition of Organisations for Patients 

with Chronic Diseases in Romania (COPAC) 

• International conference “Importance of 

opening a free labour market for disabled 

people” – March 9-10 2010, Targu Mures 

– organised by Alpha Transylvania 

Foundation 

• National Patients’ Conference “Communication 

for health. Health for patients” – March 11- 

12, 2010, Bucharest – organised by Health 

Media Group 

• Ceremony to award the “Legion of Honour” 

title to Christel Nourissier, EURORDIS general 

secretary – March 25, 2010, Paris 

• EURORDIS Board Meeting – March 26-27, 

2010, Paris 

• National Workshop “Increasing the role 

of civil society in public health research” 

– March 31, 2010, Bucharest – organised by 

the Centre for Health Policies and Services 

in partnership with the Public Health and 

Management Department of University of 

Medicine and Pharmacy Carol Davila and 

the Romanian Public Health and Sanitary 

Management Association. 

• COPAC - Coalition of Organisations for 

Patients with Chronic Diseases in Romania 

- General Assembly, April 18, 2010, Brasov 

• Information session on the master degree 

programme “Language therapy and 

educational audiology” – April 23, 2010, Zalau 

- organised by the Babes-Bolyai University, 

Department of Psychology and Education 

Sciences at Corneliu Coposu School. 

• European Conference on Rare Diseases 

– May 13-15, 2010, Cracow, organised by 

EURORDIS 

• The VII-th International Prader Willi 

Conference – May 20-23 2010, Taipei, 

Taiwan, organised by IPWSO 


• Europlan Conference Bulgaria – May 28-31, 

2010, Plovdiv 

• The VIIth International Conference New 

horizons in treating cancer – June 18-20 

2010, Vienna 

• Houston Farma Practic Manifestation – 

Congress of Pharmacists – June 25-26, 2010, 

Sovata – organised by Huston Company 

• Annual Conference of the Romanian 

Federation of Cancer Patient Associations 

– June 25-27, 2010, Brasov – organised by 

FABC, COPAC and the Doctors’ Collegium 

Romania 

• EURORDIS Board Meeting – July 1-2, 2010, 

Paris 

• Meeting of the organisation committee 

of the EUROPLAN Conference in Hungary 

– August 31, 2010, Budapest – organised by 

HUFERDIS – Hungarian National Alliance for 

rare Diseases 

• Annual Assembly of the Romanian Williams 

Syndrome Association – September 18 2010, 

Bucharest 

• The VII-th edition of the National Workshop 

on Multiple Sclerosis “Innovative concepts in 

multiple sclerosis” – September 24-26, 2010, 

Sibiu – organised by the Romanian Multiple 

Sclerosis Society 

• The First South-Caucasus International 

Conference on rare Diseases and Orphan 

Medicines – October 7-8, Yerevan, Armenia 

• EUROPLAN Conference in Hungary – October 

15-16, 2010, Budapest – organised by 

HUFERDIS – Hungarian National Alliance for 

rare Diseases 

• Workshop – Romanian Network of Hereditary 

Angioaedema – October 15, 2010, Targu 

Mures 

• European Patients Forum Autumn Workshop 

- October 26-27, 2010, Budapest, Hungary – 

organised by European Patients Forum and 

the Hungarian Association of Osteoporosis 

Patients 

• Meeting of Consultative Patients Group 

of Genzyme – November 16-17, 2010, 

Amsterdam 

• EURORDIS Board Meeting – November 19- 

20, 2010, Paris 

• Annual Forum of Service providers for 

disabled people – 25-26 November 

2010, Targu Mures – organised by Alpha 

Transylvania Foundation 

• The XI-th EPPOSI workshop (European 

Platform for Patients’ Organizations) 

“Working together to define research, 

Regulations and Realities specific for the EU 

Rare Disease Community” - 29–30 November, 

2010, Prague, Czech Republic 

• The Conference “European Year for Fighting 

against Poverty and Social Exclusion”, 

December 8, 2010, Bucharest – organised by 

the Ministry of Labour, Family and Social 

Solidarity 

• First meeting of EUCERD – European Union 

Committee of Experts in Rare Diseases – 

December 09-10, 2010, Luxemburg 

• Meeting of National Alliances Council – 

December 12, 2010, Paris 

• Round Table of Companies – December 13, 

2010, Paris – organised by EURORDIS 


Members of the National Committee for Rare Diseases 

Arion Camelia 

Dr. Badiu Corin 

Barna Laurenţiu 

Băican Cosmina 

Dr. Burada Florin 

Câmpan Mariana 

Cordea Carmen 

Dr. Covaciu Claudia 

Cristea Monica 

Dan Dorica 

Daniel Andrei 

Darko Emese 

Dr. Dobrescu Amelia 

Dombi Istvan 

Fazacas Mihaiela 

Dr. Gafencu Mihai 

Ghilea Ioana 

Dr. Gorduza Vlad 

Dr. Isar Cristina 

Joldeş Iulia 

Lazar Zsuzsa 

Dr. Moldovan Dumitru 

Pastor Aida 

Dr. Plaiasu Vasilica 

Pleticha Rob 

Dr. Pop Victor 

Popa Doina 

Porumb Darius 

Dr. Puiu Maria-Julieta 

Dr. Rotaru Ioana 

Dr. Rusu Cristina 

Sabău Amalia 

Dr. Severin Emilia 

Dr. Skrypnyk Cristina 

Dr. Szekely Aurelia 

Torje Claudia 

Dr. Vladu Cristina 

Sălaj County Council 

Zalău Local Council 

EURORDIS 

Genzyme 

Innovation Norway 

Kindness for Kids 

SC Mag Service SRL 

SC Transimont SRL 

SC TraProMec SRL 

Novartis 

PSD Zalău 

ROAD 

SC Accent Art SRL 

SC Duo Select SRL 

SC Electrogrup SRL 

SC Forsacom SRL 

SC GFM SRL 

SC Info Plus SRL 

Funders and sponsors 

SC Tehno Print SRL 

SC Tenaris Silcotub SA 

SC Titan Comert SRL 

1. Increasing the involvement of patients with 

rare diseases in developing European and 

national policies and strategies for health, 

social assistance and appropriate education 

for people affected by rare diseases 

2. Improvement in information, training and 

community integration for patients with 

rare diseases 

3. Improving the competencies of health 

professionals, social, educational professionals 

etc., for an integrated approach for 

patients with rare diseases 

1. Introducing the National Plan for Rare 

Diseases in the National Public Health 

2. Continuing the Rare Disease Day Campaign 

3. Launching and functioning of the virtual 

platform for rare diseases: 

www.edubolirare.ro 

4. Ensuring the sustainability of NoRo project 

5. Official opening of the Pilot Reference 

Centre for Rare Diseases “NoRo” 

6. Organising groups/courses for patients and 

finding the necessary funding 

7. Organizing courses for specialists 

Strategic objectives of RPWA for 2011 

4. Implementation and certification of 

integrated management services provided 

by the association 

5. Increasing the income of the association 

by initiating and developing forms of social 

economy 

6. Diversification of funding resources from 

community 

Strategic actions in 2011 

8. Organising a European Conference for Rare 

Diseases 

9. Organizing the Third East European 

Conference Prader Willi 

10. Continuing the Big Brother Big Sister 

project 

11. Initiating social entrepreneurship activities 

12. Implementing quality standards for our 

services 

13. Promoting our services at national and 

international level 


Financial Report 

Incomes 

3.005.537 lei 

Innovation Norway grant 2.711.853 lei 

Kindness for Kids grant 47.729 lei 

MMSSF grant 47.400 lei 

County Council Sălaj grant 33.600 lei 

ROAD grant 29.670 lei 

Local Council Zalău – DASC grant 15.838 lei 

PWA-Clin-Epi-Gen project grant 4.000 lei 

PSD donation 3.027 lei 

SC Tenaris Silcotub SA sponsorship 43.200 lei 

Novartis sponsorship 6.700 lei 

SC GFM SRL sponsorship 6.000 lei 

SC Titan Comert SRL sponsorship 4.000 lei 

SC Electrogrup SRL sponsorship 3.000 lei 

Income from rendered services 6.650 lei 

Other incomes 42.871 lei 

Expences 

NoRo Pilot Center renovation and 

construction 

3.483.446 lei 

1.931.335 lei 

Staff and collaborators 544.711 lei 

Equipment and inventory objects 315.430 lei 

Informative and promotional 

materials 

157.145 lei 

National Committee for Rare 

Diseases 

138.263 lei 

Running costs and maintenance 113.531 lei 

Conferences and meetings 107.835 lei 

Advisory committee 48.232 lei 

Other expenses 126.964 lei

Annual Activity Report 2010 Romanian Prader Willi Association ...

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