OUR MEMBERS
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The AADC Research Trust
Welcome to The AADC Research Trust, a Charity Organisation dedicated to
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Aarskog Foundation
We are an international Rare Disease, Patient Charity across 28 countrie
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Action on Gilbert's Syndrome
Action on Gilbert’s Syndrome has been in existence since 2003. Since t
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adrenal hyperplasia network
The Adrenal Hyperplasia Network UK has been set up to provide support fo
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Addison's Disease Self-Help Group
The Addison’s Disease Self-Help Group is the support group for people
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Advocacy for Neuroacanthocytosis Patients
The Advocacy for Neuroacanthocytosis Patients was established in 2002 to
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albinism fellowship UK ireland
The Fellowship is a positive and sociable volunteer-run organisation tha
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alkaptonuria society
Transforming the lives of AKU patients; through patient support, communi
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Alpha-1 Awareness UK
Welcome to Alpha-1 Awareness, a UK Charity that Supports people with AAT
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alpha-1 UK support group
The Alpha-1 UK Support Group is a not for profit organisation and regist
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Alström Syndrome UK
Alström Syndrome is an ultra rare recessively inherited genetic disorde
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ANE international
Acute Necrotizing Encephalopathy is a rare type of brain disease that oc
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annabelle's challenge
Annabelle's Challenge is the leading charity for vascular Ehlers-Danlos
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archangel MLD trust
ArchAngel MLD Trust was established to support medical teams around the
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association for glycogen storage diseases UK
The AGSD-UK provides support and help for individuals and families affec
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Bardet-biedl Syndrome UK
Bardet-Biedl Syndrome UK is the only registered charity supporting peopl
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batten disease family association
Our mission is to enable everyone who is affected by Batten disease to l
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Beckwith-Wiedemann Support Group UK
We provide information about Beckwith Wiedemann Syndrome, links with oth
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british heart foundation
We're the British Heart Foundation, and we fund research to keep hearts
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CADASIL Support UK
We set up the website because we know how scary it can be once you have
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cambridge rare disease network
Cambridge Rare Disease Network (CRDN) is a charity building a regional c
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Cardiomyopathy UK
We have support groups around the UK and more are starting all the time.
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Cavernoma Alliance UK
Cavernoma Alliance UK (also known as CAUK) is a charity created for peop
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CdLS Foundation UK and Ireland
The CdLS Foundation UK & Ireland is part of a Federation of CdLS fam
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CHAMP1 Patient Support Group
Our aim is to gain a better understanding of the CHAMP1 gene mutation. B
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Charcot-Marie-Tooth UK
Charcot-Marie-Tooth disease (CMT), and the related disorders distal here
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The Children’s Hyperinsulinism Charity
Our Charity (UK Registered 1165562) was established in February 2016 aft
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childhood eye cancer trust
Our roots begin in 1984, when we were originally called FISH (Family Inf
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Children's Liver Disease Foundation
Children's Liver Disease Foundation is a leading charity.
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Children’s Health Scotland
Children’s Health Scotland is the only charity in Scotland dedicated t
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children's mitochondrial disease network
CMDN was the UK's 1st charity dedicated to specialising in Mitochondrial
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CAH support group
The CAH (Congenital Adrenal Hyperplasia) Support Group was formed approx
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costello support group international
We’re a parent to parent support group that shares information about C
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cri du chat syndrome support group
There is a lot of help and advice out there to help you, and families al
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Childhood Tumour Trust
We are a charity supporting children, young people and their families af
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Cure And Action Tay-Sachs Foundation
Tay-Sachs and Sandhoff disease are genetic diseases which are terminal i
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cystic fibrosis trust
The Cystic Fibrosis Trust is the only UK charity dedicated to fighting f
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DDDC3G Renal Support Group UK
We are a UK charity dedicated to providing information, understanding an
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Dercums Disease and Rare Disease Foundation UK
We decided to do something for Dercums Disease and the many rare disease
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Diamond Blackfan Anaemia Support Group UK
Diamond Blackfan Anaemia (DBA) is a rare bone marrow failure disorder, u
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Dravet Syndrome UK
Dravet Syndrome UK is an independent UK charity dedicated to improving t
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East Lancashire Community Genetics Service
Our service was introduced to enhance the understanding of genetics with
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east london branch sickle cell society
Sickle cell disease is the name for a group of inherited conditions that
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Ehlers-Danlos Support UK
We are the only UK-wide charity actively supporting people touched by an
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FAP gene support group
The FAP Gene Website was started in 2004 by Mick Mason in Melton Mowbray
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Fibrous Dysplasia Support Society UK
FDSSUK is a charity which provides support for patients, carers and thei
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Fibromuscular Dysplasia (FMD) Society
"This closed group is for people diagnosed with Fibromuscular Dysplasia
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FSH Muscular Dystrophy Support Group
As a support group partner of the Muscular Dystrophy UK, we are here to
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GATA2 Deficiency Support Group
This group exists to create a safe and supportive environment for parent
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The Aplastic Anaemia Trust
The Aplastic Anaemia Trust is the only charity in the UK that exists to
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Genetic Disorders UK
Genetic Disorders UK is a registered charity with a vision to improve th
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gorlin syndrome group
The Gorlin Syndrome Group is a support network offering guidance and inf
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haemophilia society
The Haemophilia Society is the only UK wide charity for all those affect
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Headlines Craniofacial Support
Headlines is a charitable organisation based in the UK which aims to pro
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hereditary spastic paraplegia group
The HSP Support Group helps people diagnosed with Hereditary Spastic Par
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HME Support Group
The Hereditary Multiple Exostoses (HME) Support Group is a voluntary, se
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Huntingtons Disease Association UK
We're here to help people living with Huntington's disease to live a bet
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Hypermobility Syndromes Association
We have been in existence since 2002 and we were know as HMSCTG, which s
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ichthyosis support group
The Ichthyosis Support Group (ISG) was formed in 1997 by a group of indi
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inherited prion disease support group
The Inherited Prion Disease Support Network was founded to offer support
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jeune syndrome foundation
The Jeune Syndrome Foundation has been set up by a Jeunes family for Jeu
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kleefstra syndrome
Kleefstra syndrome (Ks) is a rare genetic disorder characterised by inte
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Klinefelter Organisation UK
Klinefelter's syndrome is named after Harry F. Klinefelter (cline-felter
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Leber's Hereditary Optic Neuropathy Society
We are a patient-led support group for a rare condition called Leber's H
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Local Families with Bleeding Disorders
We are a group of families living with rare, genetic bleeding disorders
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Lynch Syndrome UK
LSUK was founded in early 2014 by a group of people that met on a social
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making it better - the daniel courtney trust
We set up our Charity, Making It Better - The Daniel Courtney Trust, in
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manchester sickle cell and thalassaemia centre
This is a patient-centred service which delivers quality care to all our
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Metabolic Support UK
Metabolic Support UK (formerly known as Climb) are the leading patient o
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Muscle Help Foundation
Muscular Dystrophy (MD) charity, rooted in family values, delivering tra
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Motor Neurone Disease Association
The Motor Neurone Disease Association is the only national charity in En
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moebius research trust
The Moebius Research Trust are raising funds to conduct research into Mo
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mowat-wilson syndrome support group
The Mowat-Wilson Syndrome Syndrome Support Group was established in Marc
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MPNG/DDD Support Group
Have you ever thought of becoming a Trustee for our Charity group? Would
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Muscular Dystrophy UK
Muscular Dystrophy UK is the charity for the 70,000 people living with m
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National Deaf Children's Society
We are the National Deaf Children’s Society, the leading charity for d
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nemaline myopathy support group
Welcome to the nemaline myopathy (NM) website, the first and most compre
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noonan syndrome assocation
NSA is a registered charity – no. 1140671 – formed in 2011 and overs
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osteopetrosis support trust
The Osteopetrosis Support Trust was first formed in 1979. A mother of an
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Phelan-McDermid Syndrome UK
Phelan-McDermid Syndrome (PMS) is caused by a deletion, or loss, of the
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PNH Support Group
PNH Support is a Charitable Incorporated Organisation (CIO) registered w
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Prader-Willi Syndrome Association UK
Prader-Willi syndrome (PWS) was first described in 1956 by Swiss doctors
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PCD family support group
Primary Ciliary Dyskinesia (PCD) is an inherited, relatively rare condit
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Primary Immunodeficiency UK
Primary Immunodeficiency UK (PID UK) is an organisation supporting indiv
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PSC Support Group
Our vision is to see a world without Primary Sclerosing Cholangitis (PSC
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PTEN UK and Ireland Patient Group
PTEN Hamartoma Tumour Syndrome (PHTS, often shortened to PTEN) is a rare
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Pseudoxanthoma Elasticum Support Group
Supporting sufferers of Pseudoxanthoma Elasticum The Pseudoxanthoma E
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Rare Autoinflammatory Conditions Community - UK (RACC-UK)
Rare Autoinflammatory Conditions Community - UK (RACC-UK) RACC -
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Ring20 Research and Support UK
Welcome to Ring20 Research and Support UK CIO which has been set up to s
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Salivary Gland Cancer UK
We’re a new charity for those with rare salivary gland cancers such as
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Scleroderma and Raynaud's UK
We think everyone should know about scleroderma. So we have created this
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sense usher service
Sense is a national disability charity that supports people with complex
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Shwachman-Diamond Support UK
There is no exercise better for the heart than reaching down and lifting
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The Smith-Magenis Syndrome (SMS) Foundation UK
Our Vision: Every person with Smith-Magenis Syndrome shall have a fulfi
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Timothy Syndrome Alliance (TSA)
TSA supports Timothy Syndrome and all other deleterious CACNA1C gene cha
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special needs jungle
Parent-led imformation resources and informed opinion about children and
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Spinal Muscular Atrophy UK
If you or someone in your family has SMA, and you live in the UK, you h
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Stargardt's Connected
Our son Ethan was diagnosed with Stargardt’s Disease in September 2015
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Stickler Syndrome UK
We are a is non profit making organisation that provides information fo
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stiff person syndrome
This site is for the support of those suffering from Stiff Person Syndro
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Thalidomide Society
The Thalidomide Society offers thalidomide survivors, their families and
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the british porphyria association
The British Porphyria Association (BPA) is a national charity for people
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The Ehlers-danlos Society
The Ehlers-Danlos Society is a global community of patients, caregivers,
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the fragile x society
Fragile X Syndrome is the most common inherited cause of learning disabi
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the gauchers association
The Gauchers Association provides support and advice to patients and the
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George Pantziarka TP53 Trust
The George Pantziarka TP53 Trust is the UK’s only charity dedicated to
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Haemochromatosis UK
Haemochromatosis UK is a patient organisation that was founded in 1991
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the lily foundation
The Lily Foundation is committed to finding a cure for mitochondrial dis
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the maddi foundation
The Maddi Foundation is a non profit charity which was founded by the fa
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The UK Mastocytosis Support Group
The UK Mastocytosis Support Group provides support to people with mastoc
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TRPS Support Group UK
TRPS Support Group UK provides sympathetic support to those with trichor
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Tuberous Sclerosis Association
Launched in 1977 with a membership of 50 families and funds of £25, the
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Turner Syndrome Support Society UK
The Society provides accurate and up-to-date information on Turner Syndr
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UK Thalassaemia Society
Thalassaemia is one of a group of genetic blood disorders referred to as
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Unique – Understanding Chromosome Disorders
In line with our Mission Statement above, we aim to act as an internatio
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The Ultra Rare Disease Disorders And Disabilities Foundation
The Ultra Rare Diseases, Disorders & Disabilities Foundation (Urddad
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williams syndrome foundation limited
The Williams Syndrome Foundation was formed as a Registered Charity in 1
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Wilson's Disease Support Group UK
WDSG-UK was founded in the year 2000 by Caroline Simms (PhD), and Linda
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Wolfram Syndrome UK
Wolfram Syndrome UK are the only support group and website in the UK for
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Womb Cancer Support UK
We are a small voluntary not for profit organisation based on Isle of Bu
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Worster-Drought Syndrome Support Group
To offer support to other families affected by Worster-Drought Syndrome.
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Yellow Brick Road Project (YBRP) Inc
The Yellow Brick Road Project is a parent-led quest to cure HNRNPH2 muta
