Annual Activity Report 2010 Romanian Prader Willi Association ...

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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 22 Annual Activity Report 2010 | Romanian Prader Willi Association
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. Annual Activity Report 2010 | Romanian Prader Willi Association 23
Page 1 and 2: Annual Activity Report 2010 Romania
Page 3 and 4: Mission RPWA VISION is a world in w
Page 5 and 6: was an exceptional year and we had
Page 7 and 8: Norwegian - Romanian Partnership (N
Page 9 and 10: ”Big Brother Big Sister” Projec
Page 11 and 12: Accredited social assistance servic
Page 13 and 14: Events & activities Annual Activity
Page 15 and 16: Fitness activities in “Big Brothe
Page 17 and 18: The festivity at the Cultural House
Page 19 and 20: eUniversity - Training in Norway Ap
Page 21: was to update the NoRo project, the
Page 25 and 26: Workshop on “Inclusive Education
Page 27 and 28: Events and activities organised in
Page 29 and 30: EUROPLAN Conference held in Buchare
Page 31 and 32: Events we attended • Opening Conf
Page 33 and 34: Members of the National Committee f

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