About the Israeli Familial Dysautonomia Organization
The daily struggle to keep the children suffering from FD healthy and functioning, including their frequent hospitalizations, creates enormous mental, physical and economic strain. A support system is necessary to help these children and their families cope. The Israeli FD Organization is a non-profit organization established in 1983 by volunteer parents of children born with FD. Currently, there are approximately 104 FD patients from 85 families that are supported by the organization. Our main goals are:
• Support and assistance in matters concerning health, welfare, and education
• Distribution of information to the general public about FD and its prevention
• Promotion of genetic and clinical research for treatment
• Support of medical centers treating FD
Our projects and activities include:
1. Support groups and embracing new families
2. Home & hospital visits
3. A home-based physiotherapy treatment project
4. A Support Fund to assist needy families within the organization
5. Special medical equipment loaning center
7. Ssminars for FD children and their families
8. dvocacy and communication with the Ministry of Health.
9. Media coverage, distribution of information leaflets
10. FD bulletin and FD directory for the families
11. Medical students’ education project to increase awareness about FD among the future generation of doctors.
12. Research fund and a Scientific Advisory Board.