Annual Activity Report 2010 Romanian Prader Willi Association ...

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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. 26 Annual Activity Report 2010 | Romanian Prader Willi Association
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 Annual Activity Report 2010 | Romanian Prader Willi Association 27
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 and 22: was to update the NoRo project, the
Page 23 and 24: of Medical Genetics in partnership
Page 25: Workshop on “Inclusive Education
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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