Here is a list of the support that we are aware of that is available to FD families (in no particular order), please let us know if we need to add anything to this list.
Other Familial Dysautonomia Charities / Foundations
The Familial Dysautonomia Foundation
Familial Dysautonomia Foundation, Inc.
315 West 39th Street, Suite 701
New York, NY 10018, USA
FDNOW
FD NOW
1170 Green Knolls Drive
Buffalo Grove, IL 60089, USA
Camp Simcha
Camp Simcha exists to make a difference to seriously ill Jewish children and their families. Their mission is to ensure that no such child or their family, anywhere in the UK has to suffer without our support.
Family Fund
Family Fund is the UK’s largest charity providing grants for families raising disabled or seriously ill children and young people. Last year, they provided 89,101 grants or services worth over £33 million to families across the UK.
The Motability Scheme
The Motability Scheme helps you get mobile by exchanging your higher rate mobility allowance to lease a new affordable car, Wheelchair Accessible Vehicle, scooter or powered wheelchair.
NHS tax credit exemption
You’re entitled to full help with health costs if your annual family income used to calculate your Tax Credits under certain circumstances
www.nhsbsa.nhs.uk/exemption-certificates/nhs-tax-credit-exemption-certificates
SEN Support
An FD child can get SEN support at their school or college.
www.gov.uk/children-with-special-educational-needs/special-educational-needs-support
EHC Plan
An education, health and care (EHC) plan is for children and young people aged up to 25 who need more support than is available through special educational needs support.
EHC plans identify educational, health and social needs and set out the additional support to meet those needs.
www.gov.uk/children-with-special-educational-needs/extra-SEN-help
Freedom Pass
Freedom Pass is a concessionary travel scheme, which began in 1973, to provide free travel to residents of Greater London, England, who are aged 60 and over or who have a disability. The scheme is funded by local authorities and coordinated by London Councils.
www.londoncouncils.gov.uk/services/freedom-pass/disabled-persons-freedom-pass
Sky Badger
Sky Badger is where you’ll find help for physical disabilities, special educational needs, mental health problems as well as finding support for your whole family.
Taxicard
The London Taxicard scheme provides subsidised door to door journeys in licensed taxis and private hire vehicles for London residents who have serious mobility or visual impairments.
www.londoncouncils.gov.uk/services/taxicard/frequently-asked-questions
Complimentary Cinema Tickets
The CEA Card is a national card scheme developed for UK cinemas by the UK Cinema Association (UKCA). The Card enables disabled cinema guests to receive a complimentary ticket for someone to go with them when they visit a participating cinema.
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Camp Simcha
Camp Simcha exists to make a difference to seriously ill Jewish children and their families. Their mission is to ensure that no such child or their family, anywhere in the UK has to suffer without our support.
Family Fund
Family Fund is the UK’s largest charity providing grants for families raising disabled or seriously ill children and young people. Last year, they provided 89,101 grants or services worth over £33 million to families across the UK.
The Motability Scheme
The Motability Scheme helps you get mobile by exchanging your higher rate mobility allowance to lease a new affordable car, Wheelchair Accessible Vehicle, scooter or powered wheelchair.
NHS tax credit exemption
You’re entitled to full help with health costs if your annual family income used to calculate your Tax Credits under certain circumstances
www.nhsbsa.nhs.uk/exemption-certificates/nhs-tax-credit-exemption-certificates
SEN Support
An FD child can get SEN support at their school or college.
www.gov.uk/children-with-special-educational-needs/special-educational-needs-support
EHC Plan
An education, health and care (EHC) plan is for children and young people aged up to 25 who need more support than is available through special educational needs support.
EHC plans identify educational, health and social needs and set out the additional support to meet those needs.
www.gov.uk/children-with-special-educational-needs/extra-SEN-help
Freedom Pass
Freedom Pass is a concessionary travel scheme, which began in 1973, to provide free travel to residents of Greater London, England, who are aged 60 and over or who have a disability. The scheme is funded by local authorities and coordinated by London Councils.
www.londoncouncils.gov.uk/services/freedom-pass/disabled-persons-freedom-pass
Sky Badger
Sky Badger is where you’ll find help for physical disabilities, special educational needs, mental health problems as well as finding support for your whole family.
Taxicard
The London Taxicard scheme provides subsidised door to door journeys in licensed taxis and private hire vehicles for London residents who have serious mobility or visual impairments.
www.londoncouncils.gov.uk/services/taxicard/frequently-asked-questions
Complimentary Cinema Tickets
The CEA Card is a national card scheme developed for UK cinemas by the UK Cinema Association (UKCA). The Card enables disabled cinema guests to receive a complimentary ticket for someone to go with them when they visit a participating cinema.