Familial Dysautonomia (FD) is a serious chronic illness that affects the autonomic nervous system, as well as the sensory nervous system and the motor system.
The illness impacts different bodily systems and is expressed by a lack of coordination and control over various functions of the body, including digestion, blood pressure, body temperature regulation, balance, breathing, skeletal damage, muscles, kidneys, eyes and more.
People with FD suffer from fits of vomiting and nausea accompanied by fever and extreme changes in blood pressure that may last for hours, days or even weeks.
The disease is hereditary and can be transmitted to the child from two healthy parents who carry the gene. A couple that is planning to have children can check if they are carriers for the gene through genetic testing that is covered in The Healthcare Basket.
Medications and the Healthcare System
- Since November 2010, FD has been officially recognized as a somatic developmental disorder.
- According to The National Health Insurance Law, children with somatic disorders are entitled to receive multi-disciplinary diagnostic and treatment services at a child development center, which are provided or paid for by their health plan. These services are provided until the child reaches the age of 18, according to need.
- For more information, see:
Specialized Medical Services
- Those with FD are entitled to medical services at a treatment center specializing in treating the disease.
- For more information, see: Specialized Medical Service.
Payment Ceiling for Medications and Medical Foods
- FD patients are considered to be chronically ill and therefore are exempt from medication costs above the monthly Medication Payment Ceiling for the Chronically Ill. (FD patients should verify with their health plan that they are registered as being chronically ill).
- They are also entitled to a Payment Ceiling for Medical Foods/Nutraceuticals. (In certain cases they may also be entitled to assistance from the Welfare Ministry.)
Purchasing Rehabilitation Devices
- Partial funding of rehabilitation and mobility devices is included as part of the healthcare basket. For more information, see:
- A Disabled Child Benefit is paid by the National Insurance Institute to children up to age 18 and 3 months based on their various disabilities and level of dependency.
- A General Disability Pension is paid to adults whose disabilities cause their earning ability to decrease by at least 50%.
- A Special Services Benefit is paid to adults with disabilities that require a high level of assistance.
- According to the National Insurance Institute circular from 16.06.2019:
- People with familial dysautonomia should receive the highest level of eligibility (188%) for a Disabled Child Benefit for in the case of children above 3 and for a Special Services Benefit for adults.
- Most children under age 3 will be eligible for a disabled child benefit of 100% because of their need for medical treatments.
- Eligibility is determined based on medical records proving the illness, that are attached to the benefit claim forms (there is no need to appear before a medical committee).
- For additional information on pensions and benefits, see:
- A person who has problems with his legs that limit his mobility is also entitled to benefits that are part of the Mobility Benefit.
- Children with FD may be entitled to receive assistance with their studies, including:
- Tax discounts for parents include:
- Parents are entitled to sick days to provide care or medical treatment to their child.
- Parents of a child who receives a Disabled Child Benefit may be entitled to the following benefits:
- Disabled Parking Permit
- Reduced License Fee for Disabled Parking Permit Holders
- Discount on Bezeq Telephone Fees
- Water Bill Benefit for Disabled Child Benefit Recipients (High Rate Discount)
- Electricity Bill Discount for Disabled Child Benefit Recipients
- Employing a Foreign Worker to Care for a Child with Disabilities
Military and National Civil Service
- Young people with medical disabilities may volunteer as part of various frameworks, such as:
- The Israeli Familial Dysautonomia Foundation
- Israel's Center for Familial Dysautonomia at Hadassah Mount Scopus
- Jordan River Village - Free vacation for chronically and seriously ill children
Laws & Regulations
- The National Health Insurance Law
- The National Insurance Law
- The Free Education for Sick Children Law
- More information about FD can be found on the following websites:
- English translation and maintenance by The Shira Pransky Project.