The document discusses the role of NGOs in educating patients with rare diseases and the general population in Romania. It describes how NGOs have filled a gap left by the lack of a governmental strategy for rare diseases. The NGOs worked with 32 children and young adults affected by 5 rare diseases, organizing a club for them. Through activities like games, trips, and celebrations together, the children were able to become more assertive and achieve developmental targets according to their parents. The conclusion is that the health and social integration of people with disabilities can be improved through opportunities for family, education, and friendship provided by community organizations like NGOs.

1. Implication of NGO^s in education of patients with rare diseases and general population Mihai Gafencu, MD, PhD, Save the Children - Romania

2. Introduction In the absence of a governmental strategy for rare diseases in the 18 years after 1990, the most neglected group of diseases in Romania, the social inclusion of these children remains to the private initiative of NGO’s. The new approach include reduced direct state involvement and searched for alternative sources of funding with a wider participation of the non-governmental sector, involving other social actors Aim of our work was to focus on the changes in life quality of children with these diseases, after a teamwork and a multidisciplinary approach.

3. In our NGO partnership (a branch of a national NGO – Save the children Romania and another local one) we worked together with 32 children and youngsters affected with 5 different rare diseases. They participate from 1999 in a Club organized by young volunteers from our organizations. Patient Support Groups and their young members representing 5 rare genetic disorders, guide other patients, families through the appropriate healthcare

4. Together! How?

5. Smiling together!

6. Singing together

7. Games, exercising together

8. With parents in the back, gaining skills together

9. Playing games together

10. Playing games together for developing attention and logic thinking !!!

11. Celebrating Christmas together

12. Making Soul friends together

13. Making Life time friends together

14. Working together in Team building programs

15. Making trips together

16. Results Children have interacted with volunteers and benefited by becoming more assertive and by achieving more developmental targets. Assessment of their progress might establish the exact role of communication among the Club (parents, volunteers, other children). The parents have witnessed important cognitive and behavioral changes in their children, facts that at this moment are our method of evaluating their progress. Together!

17. Conclusions The health of people with disability and the social integration can be improved if they have every opportunity to enjoy family life, education, friendship, access to public facilities and freedom of movement. Action should be aimed at counteracting helplessness and stigmatization. We provide expertise and experience in a community organization, which the government services do not possess, as well as increase the delivery of community-based primary health care. TOGETHER

18. Thank U all! TOGETHER!