Annual Activity Report 2010 Romanian Prader Willi Association ...

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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. 18 Annual Activity Report 2010 | Romanian Prader Willi Association
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 April 15, 2010, Zalau 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 April 19, 2010, Zalau 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. Annual Activity Report 2010 | Romanian Prader Willi Association 19
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: The festivity at the Cultural House
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

Annual Activity Report 2010 Romanian Prader Willi Association ...

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