Please see if there is a charity specific to your disease of interest before contacting us
If there is a rare disease that we are missing, or this table needs updating in any way, please contact us
| Disease | Location | Charity | What they do | Website |
|---|---|---|---|---|
| Acrodermatitis | UK | CLIMB | Climb National Information Centre for Metabolic Diseases | www.Climb.org.uk |
| Addison Disease | UK | Addisons Disease Self Help Group | The ADSHG is the UK support group for men, women and children diagnosed with Addison's Disease (or adrenal insufficiency). | www.Addisons.org.uk |
| Adie Syndrome | UK | The Eye Care Trust | Raises awareness of all aspects of eye health and the importance of regular eyecare | www.EyeCareTrust.org.uk |
| Alagille Syndrome | UK | The Childrens Liver Diseases Foundation | The voice for babies, children young people and their families and adults diagnosed in childhood ensuring that childhood liver diseases are understood, prevented and outcomes optimised through excellent research, effective information and emotional support. | www.ChildLiverDisease.org |
| Amyotrophic Lateral Sclerosis | US | The ALS Association | The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure. | www.ALSAorg |
| Angelman Syndrome | UK | The Angelman Syndrome Support Education & Research Trust. | Support, Education and Research | www.AngelmanUK.org |
| Arnold-Chiari Malformation | UK | The Ann Conroy Trust | Provides support and education for those living wih Chiari Malformation, Syringomyelia and associated conditions | www.AnnConroyTrust.org |
| Arthritis, Juvenile Rheumatoid | UK | The Childrens Chronic Arthritis Association | The leading charity run by parents and professionals to provide a support network for children with Arthritis and their families. | www.ccaa.org.uk |
| Asperger Syndrome | UK | The National Autistic Society | The leading UK charity for people on the autism spectrum (including Asperger syndrome) and their families. | www.Autism.org.uk |
| Apert syndrome | USA | Aspert International Inc | Provides education and information to the general public about Apert Syndrome, and direct financial and emotional assistance, based on need, to families affected by Apert Syndrome | www.Apert-International.org |
| Bardet-Biedl Syndrome | UK | The Laurence-Moon-Bardet-Biedl Society | The only registered charity supporting people with Laurence-Moon-Bardet-Biedl Syndrome, their families and carers. | www.lmbbs.org.uk |
| Barrett Esophagus | UK | The Barrett’s Oesophagus Campaign | The only national charity dedicated to the prevention of cancer from Barrett’s Oesophagus and the support of people living with the disease. | Ciick Here |
| Beckwith-Wiedemann Syndrome | UK | Beckwith-Wiedemann Syndrome Support Group | Aims to promote both public and professional awareness of BWS and to support and encourage research. | www.BWS-Support.org.uk |
| Behcet Syndrome | UK | Behçet?s syndrome Society | Represents Behçet’s disease patients and their carers in the UK. They also exist for those not yet diagnosed with Behçet’s disease and those who think they may have Behçet’s disease. | www.Behcets.org.uk |
| Bloom Syndrome | UK | Bloom's Syndrome Foundation | Funds research for the development of a therapy for Bloom's Syndrome | www.bloomssyndrome.org |
| Bowen's Disease | ||||
| Brachial Plexus Neuropathies | Trauma Brachial Plexus Injury Group | To supply support and information to adults suffering from TPBI | ||
| Brown-Sequard Syndrome | ||||
| Budd-Chiari Syndrome | ||||
| Burkitt Lymphoma | Burkitt's Lymphoma Society | Spreading the word about Burkitt Lymphoma | ||
| Carcinoma 256, Walker | ||||
| Caroli Disease | ||||
| Charcot-Marie-Tooth Disease | UK | CMT | To offer assistance and support to those people who have Charcot-Marie- Tooth Disease.To promote research into the means by which CMT may be prevented and treated and to circulate the results of such research for the benefit of the public. | |
| Chediak-Higashi Syndrome | ||||
| Chiari-Frommel Syndrome | ||||
| Chondrodysplasia Punctata | ||||
| Colonic Pseudo-Obstruction | UK | P.O.R.T | The aim of the charity is to fund research into C.I.P.S. and raise public and professional awareness into this serious and sometimes fatal illness | |
| Colorectal Neoplasms, Hereditary Nonpolyposis | ||||
| Congenital DIaphragmatic Hernia Research, Awareness and Support | USA | CHERUBS | An international charity, helping over 5000 families in 60 countries and leading the way in CDH Research, Awareness and Support services | www.Cherubs-cdh.org |
| Congenital Diaphragmatic Hernia | UK | CDH-UK | A support network of other parents and families who had endured similar experiences. | www.cdhuk.org.uk |
| Craniofacial Dysostosis | ||||
| Creutzfeldt-Jakob Syndrome | UK | CJD - Support Network | Offering support to individuals and families concerned with all forms of CJD. Created a national helping to help those with all forms of CJD | |
| Crohn Disease | UK | Crohn's and Colitis UK | Improving care and services for those with Crohn Disease | |
| Cushing Syndrome | UK | CSRF | To help increase awareness and providing local support groups. | |
| Cystic Fibrosis | UK | Cystic Fibrosis Trust | Creating a world where being born with CF no longer means a life-long struggle, when everyone living with the condition will be able to look forward to a long, healthy life. | https://www.cysticfibrosis.org.uk/ |
| Dandy-Walker Syndrome | USA, Australia, Canada | Dandy-Walker Alliance | Providing support and information to those suffering from the disease and to family members | |
| De Lange Syndrome | UK | cdLS Foundation | Ensuring early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome and help people with a diagnosis of CdLS to make informed decisions throughout their lifetime. | |
| Dementia, Vascular | ||||
| Dermatitis Herpetiformis | UK | Coeliac UK | Providing expert and independent information to help people manage their health and diet. Campaigning for better access to diagnosis and care and better access to food in and out of the home. Researching the nature of the disease and potential cures. | |
| DiGeorge Syndrome | UK | MaxAppeal! | To help people lead an independent and economically prosperous life as possible with Max Appeal being the voice to achieve appropriate medical care, social support, employment and empowerment for individuals and their families. | |
| Diffuse Cerebral Sclerosis of Schilder | ||||
| Duane Retraction Syndrome | ||||
| Dupuytren Contracture | UK | The British Dupuytren's Society | Raising awareness, improve knowledge of the treatments available and encourage research into their prevention and treatment. | |
| Ebstein Anomaly | Ebsteins Society | To work towards the eradication of the disease. To promote best treatments worldwide. To provide a place to share information, learn from the experiences of others, and raise awareness. | http://www.ebsteins.org/ | |
| Eisenmenger Complex | UK | dhg-Down's Heart Group | A charity offering support and information relating to heart conditions associated with Down's Syndrome. | |
| Ellis-Van Creveld Syndrome | ||||
| Encephalitis | UK | The Encephalitis Society | To help people have access to early diagnosis, excellent management of their condition, timely access to rehabilitation and other forms of social support. | |
| Enchondromatosis | ||||
| Epidermal Necrolysis, Toxic | UK | Stevens Johnson Syndrome Foundation | The purpose of the foundation is to provide the public and medical communities with information on adverse drug reactions. Our goal is to make the public awareso that a quick diagnosis may be made and the offending drug stopped as soon as possible. Also providing emotion support. | |
| Facial Hemiatrophy | ||||
| Factor XII Deficiency | ||||
| Familial Dysautonomia | UK | FD-UK | Provides Suppliments and some financial assistance to families | www.FamilialDysautonomia.co.uk |
| Familial Dysautonomia | USA | The Dysautonomia Foundation, Inc. | Supporting the best possible medical care and scientific research for the benefit of people afflicted with FD. | www.FamilialDysautonomia.org |
| Fanconi Anemia | UK | Fanconi Hope Charity | To support a UK Fanconi Anaemia National Registry so as to ensure Fanconi Anaemia affected children and their families are kept track of and provided with the best care. Promoting awareness and understanding among affected families. | |
| Felty's Syndrome | ||||
| Fibrous Dysplasia, Polyostotic | Fibrous Dysplasia Foundation | Promote mutual support through support groups. Promoting increased awareness, knowledge and understanding about fibrous dysplasia. | ||
| Fox-Fordyce Disease | ||||
| Friedreich Ataxia | Ataxia | To support families an people living with Friedrecih Ataxia, | ||
| Fusobacterium | ||||
| Gardner Syndrome | ||||
| Gaucher Disease | UK | Gauchers Association | To provide information about Gaucher disease and keep families and medical advisers up to date with latest research developments. • To encourage the availability of treatment including enzyme replacement therapy • To keep families in touch for support • To actively promote medical research into Gaucher disease. | |
| Gerstmann Syndrome | ||||
| Gianotti Crosti Syndrome | No Known support groups | Please let us know if you are aware of a support group | ||
| Giant Lymph Node Hyperplasia | ||||
| Glycogen Storage Disease Type I | UK | ACSD- Association for Glycogen Storage Disease UK | The AGSD-UK provides support and help for individuals and families affected by Glycogen Storage Disease (GSD). It does this by putting people in contact, providing information, issuing Newsletters and holding Conferences and Workshops | www.agsd.org.uk |
| Goldenhar Syndrome | UK | Goldenhar UK | to support families throughout the UK who face the day to day challenges of supporting relatives with Goldenhar Syndrome and related problems, | www.goldenhar.org.uk |
| Guillain-Barre Syndrome | UK-Ireland | Gain | Our help is available for everyone, whether you are the patient or close to someone who has been diagnosed. | |
| Hallermann's Syndrome | ||||
| Hamartoma Syndrome, Multiple | UK | Cowden disease | We provide information, advice and support. We bring families together so they can support each other. We campaign to improve their circumstances, and for their right to be included and equal in society. | |
| Hartnup Disease | ||||
| Hepatolenticular Degeneration | ||||
| Hereditary Sensory and Motor Neuropathy | ||||
| Hirschsprung Disease | ||||
| Histiocytic Necrotizing Lymphadenitis | ||||
| Histiocytosis, Langerhans-Cell | UK | Histiocytosis UK | We fund research & information support to improve the lives of patients & families Care 157 | |
| Hepatolenticular Degeneration | ||||
| Horner Syndrome | ||||
| Huntington Disease | UK | HDA- Huntington's Disease Association | The Huntington’s Disease Association exists to support people affected by the disease and to provide information and advice to professionals whose task it is to support Huntington’s disease families. | |
| Hyperaldosteronism | ||||
| Hyperhidrosis | Hyperhidrosis support group | Helping sufferers to get the answers they need | ||
| Hyperostosis, Diffuse Idiopathic Skeletal | ||||
| Hypopituitarism | UK | THe Pituitary Foundation | We're here for anyone affected by pituitary conditions. We give support, information and we bring people together. We provide information to health professionals and we campaign to raise awareness of issues facing pituitary patients, their families and carers | |
| Inappropriate ADH Syndrome | ||||
| Intestinal Polyps | ||||
| Isaacs Syndrome | ||||
| Kartagener Syndrome | ||||
| Kearns-Sayre Syndrome | ||||
| Klippel-Feil Syndrome | ||||
| Klippel-Trenaunay-Weber Syndrome | ||||
| Kluver-Bucy Syndrome | ||||
| Korsakoff Syndrome | UK | Young Dementia UK | To help people who have Korsakoff Syndrome | |
| Lafora Disease | Epilepsy Foundation | To contact other families with members suffering gaining support from eachother. | ||
| Lambert-Eaton Myasthenic Syndrome | ||||
| Landau-Kleffner Syndrome | ||||
| Langer-Giedion Syndrome | ||||
| Leigh Disease | ||||
| Lesch-Nyhan Syndrome | ||||
| LkodysGloboid Celleutrophy, | ||||
| Li-Fraumeni Syndrome | UK | The George Pantziarka TP53 Trust | Our aim is to provide practical advice and support, create a sense of community among affected families and to promote research of benefit to people suffering from these conditions. | |
| Long QT Syndrome | ||||
| Machado-Joseph Disease | MJD Foundation | |||
| Mallory-Weiss Syndrome | ||||
| Marek Disease | ||||
| Marfan Syndrome | UK | The Marfan Trust | Our Mission The Marfan Trust is the only Marfan charity in the UK that funds its own laboratory undertaking medical and analytical research so that more is known about Marfan syndrome and its management. The results of our internationally recognised research enable doctors and surgeons to provide better treatment for patients in the short and long term. | |
| Meckel Diverticulum | ||||
| Meige Syndrome | ||||
| Meniere Disease | Meniere Society | We provide support and information to those affected by vestibular disorders and fund vital research into all aspects of these conditions. | ||
| Mikulicz' Disease | ||||
| Miller Fisher Syndrome | ||||
| Mobius Syndrome | ||||
| Moyamoya Disease | ||||
| Mucocutaneous Lymph Node Syndrome | ||||
| Mucopolysaccharidosis I | National MPS Society | To raise awareness and provide support | ||
| Mucopolysaccharidosis II | ||||
| Mucopolysaccharidosis III | ||||
| Mucopolysaccharidosis IV | ||||
| Mucopolysaccharidosis VI | ||||
| Multiple Endocrine Neoplasia Type 1 | Association for Mutiple Endocrine Neoplasia Disorders | The aim of our website is to direct you as quickly as possible to our support services and to information you can trust on MEN1, MEN2, MEN3, MTC (medullary thyroid cancer), FMTC (familial medullary thyroid cancer), adrenal gland tumours (phaeochromocytomas), parathyroid hyperplasia, paragangliomas, FIPA (familial isolated pituitary adenoma) and SDHx (succinate dehydrogenase) disorders. | ||
| Munchausen Syndrome by Proxy | ||||
| Muscular Atrophy, Spinal | Uk | Spinal Muscular Atrophy Support UK | We are an established charity that supports and empowers anyone affected by Spinal Muscular Atrophy. We are advocates for better services, raise public awareness and fund research related initiatives. | |
| Narcolepsy | UK | Narcolepsy UK | Supporting people with narcolepsy, their families, carers and others interested in improving their quality of life | |
| Neuroaxonal Dystrophies | ||||
| Neuromyelitis Optica | ||||
| Neuronal Ceroid-Lipofuscinoses | UK | NMO-UK | a charity that will both support sufferers and raise awareness of this terrible disease. | |
| Niemann-Pick Diseases | UK | Niemann Pick Patients UK | To provide care, support and advice To listen and to answer your questions To raise awareness and enable research To provide HOPE for the future | |
| Noonan Syndrome | UK | Noonan Sydrome Association | Support families and groups as well as funding medical research. | |
| Opti Hereditary c Atrophies, | ||||
| Osteitis Deformans | ||||
| Osteochondritis | UK | The Perthes Association | Helping children with Osteochondritis PERTHES ASSOCIATION | |
| Osteochondrodysplasias | ||||
| Osteolysis, Essential | ||||
| Tay-Sachs Disease | USA | Cure Tay Sachs Foundation | Dedicated to funding the research projects that provide HOPE for developing a treatment and/or cure for Tay-Sachs disease | www.CureTay-Sachs.org |
| Tay-Sachs Disease | UK | CATS | The charity provides a support network, respite trips and vital equipment so that a sufferers quality of life is as high as possible. The CATS Foundation also provides funding to the research team investigating a potential treatment for both Tay-Sachs and Sandhoff disease. | www.Cats-Foundation.org |
