Israeli Familial Dysautonomia Organization
What is Familial Dysautonomia?
Familial Dysautonomia is an inherited incurable genetic disease. It affects Jews in general and Ashkenazi Jews specifically at a ratio of 1:30 (For every thirty Jews, one is a carrier of the disease.) The disease affects the autonomic nervous system, the motor system and the sensory system as well.
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Education with a Smile
Familial Dysautonomia doesn't necessarily affect the cognitive abilities of the patients. Therefore, most of the students choose to be part of the regular school system. Unfortunately, as a result of complications and frequent hospitalizations, students are absent from school more than the average student. Missing a lot of school has a personal emotional cost as well as an educational one.
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"The independence Road" Project
With medical developments, new research and increased knowledge of the disease, the life span of t FD patients has lengthened significantly. This welcome development has brought with it the necessity to deal with new and different issues. The struggles with the complicated daily care regime, frequent hospitalizations, para-medical treatments and difficult physical challenges create emotional and physical stress for the patients and their families.
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Social Services and Support groups
The Familial Dysautonomia (FD) Foundation works to support the well-being and the improvement of the quality of life of its 112 patients and their families. Familial Dysautonomia is an inherited incurable genetic disease which becomes progressively worse as the patients grow older.
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The "Special Needs" Foundation
The "Special Needs" Foundation is run by an external and independent committee comprised of the Chairman Menachem Tulsinski (a lawyer), Mrs Shlomit Liraz (a mother who lost two children to FD) and Mr. Tovia Eldan (former financial attaché to Korea).
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