Benefits and Support for FD Families

Benefits and Support for FD Families

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

FamilialDysautonomia.org

FDNOW

FD NOW
1170 Green Knolls Drive
Buffalo Grove, IL 60089, USA

FDnow.org

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.

www.CampSimcha.org.uk

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.

www.FamilyFund.org.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.

www.Motability.co.uk

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.

Skybadger.co.uk

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.

www.CEAcard.co.uk

Add title

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.

www.CampSimcha.org.uk

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.

www.FamilyFund.org.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.

www.Motability.co.uk

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.

Skybadger.co.uk

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.

www.CEAcard.co.uk