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P.O. BOX 17679


NW4 1WS:

Email: Committee@fd-uk.org

UK registered charity number 285399

All information contained on the familialdysautonomia.co.uk website is intended for informational and educational purposes. The information is not intended nor suited to be a replacement or substitute for professional medical treatment or for professional medical advice relative to a specific medical question or condition.


We urge you to always seek the advice of your physician or medical professional with respect to your medical condition or questions. As a recipient of information from this website, you are not establishing a doctor/patient relationship with any physician. There is no replacement for personal medical treatment and advice from your personal physician.

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About us

Familial Dysautonomia United Kingdom (FDUK) is a UK charity, set up over 40 years ago to help support sufferers of FD and their families.


Formally known as the Dysautonomia Society of Great Britain (DSGB) the charity strives to raise awareness of the condition in the community. Its aim is also to raise money to fund individual medical needs and requirements, as well as pay for specialised doctors to cone to London to hold clinics to assess the FD sufferers as well as guide UK doctors in the specialised expertise.

The Society supports medical research and clinical care by:

• Helping FD children and their families.
• Helping to train UK specialists and therapists in the treatment of dysautonomia.
• Helping to fund research into FD by eminent scientists around the world.
• Bringing the top specialists from abroad to the UK

The Society also provides a continual flow of information to members, parents, professionals and anyone requesting medical, educational or professional information on FD.


The FD UK charity is structured as follows:

Main Committee:

Chair:                        Simeon Cohen

Vice Chair:                Dr. Shara Cohen

Joint Treasurers:       Sara Landau & Daniel Morris

Secretary:                 Dr. Jeffrey Freilich

Scientific advisor:      Dr. Shara Cohen

Catering:                    Esther Freilich

Minutes Secretary:    Dr. Jeffrey Freilich

Brochure Organiser:  Lawrence Jacobs

Marketing:                  Dr. Tamira King

FD Ambassador:       Daisy Cohen


Additional Members: Ian Jacobs / James Jacobs / David Obermiester / Ian Pearl  / Moshe King

Trustees:                   Sara Landau / Anthony Landau / Bryan King

Patron Member:     Lady Elaine Sacks 


Lady Sacks has been actively involved in many aspects of the Jewish Community for over

30 years. She takes a particular interest in supporting numerous charities, both Jewish and

non-Jewish – including many organisations associated with Jewish education. We are especially 

proud to Lady Sacks support, dedication and warmth.

Lady Sacks originally trained and practised as a radiographer, and today teaches and

mentors in Jewish communities throughout the UK and across the world. Taking the

opportunity to continue her studies, she was recently awarded an MSc in Criminology.

She has three children, and is the proud grandmother of several grandchildren.