Annual Activity Report 2010 Romanian Prader Willi Association ...

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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. 12 Annual Activity Report 2010 | Romanian Prader Willi Association
Events & activities Annual Activity Report 2010 | Romanian Prader Willi Association 13
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: Accredited social assistance servic
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 and 22: was to update the NoRo project, the
Page 23 and 24: of Medical Genetics in partnership
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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