Israeli Familial Dysautonomia Organization

About Us

The Israeli Familial Dysautonomia Association (IFDA) was founded in 1993 and is still managed by parents searching for a way to help their children who are suffering from FD. The IFDA’s goals are to save lives and allow those afflicted with the FD disorder to lead a dignified life.

About Familial Dysautonomia (FD)

FD is a genetic disorder that disturbs cells in the autonomic nervous system, which controls involuntary actions such as digestion, breathing, tear production, and the regulation of blood pressure and body temperature. It also affects the sensory nervous system, which controls senses-related activities such as taste and the perception of pain, heat and cold. 

People living with the FD disorder suffer from a wide range of disabilities, including respiratory, cardiovascular, orthopedic, digestive and vision treatments, surgeries and frequent hospitalization.

Though FD affects people across the world, it occurs almost exclusively in children with Jewish heritage. With only 100 people currently living with FD in Israel and 300 worldwide, it is the one of the world’s rarest diseases. Since it originates from a rare mutation, FD is often referred to as an “orphan disorder”, and as such it is characterized by a lack of proper medical and pharma attention.

To Achieve This We:

 

Increase public awareness to prevent the further expansion of the mutation 

  • Manage an awareness campaign for this genetic disorder
  • Provide a network for people with special needs, focusing on employment opportunities

Ensure medical care and procurement of life-saving medical equipment 

  • Procurement of technological devices such as dedicated life-saving watches to continuously monitor medical indicators
  • Procurement of medical equipment such as oxygen generators and various meters
  • Development of a comprehensive health-care program. Support the only medical center in which treatment is available at Shiba Tel hashomer Hospital.
  • Help with medical care and supporting equipment for homecare.

Promote research for a cure and support medical centers

  • Support the medical research led by Professor Miguel Weil. Funding, data collection and administrative assistance for another big lab study, it’s all in the race to the cure that we’re so close to winning.

Advocate the personal needs of FD families to the various governmental organizations 

  • Employment of a dedicated social worker to provide personal support

Create a supportive community for afflicted families and provide them with dedicated support groups, workshops, training and well-being programs

  • “365 project” – designed to answer the needs and challenges of the FD community, 365 days a year as a pert of comprehensive health-care program.
  • “Adva” – A leadership program of people with special needs for people with special needs
  • Employment & residence programs to provide FD-afflicted adults with the opportunity to lead an independent life
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