This is an alphabetical list of all our member organisations.
If you are looking for support for a specific condition and cannot see a relevant organisation listed here, please get in touch via [email protected] and we will help.
A B C D E F G H I J K L M N O P Q R S T U V W X Y Z
A
- Achalasia Action
- Acrodysostosis Support & Research
- ACTA2 Alliance
- Action Duchenne
- Action FCS (prev. LPLD Alliance)
- Action Medical Research
- Action on Gilbert’s Syndrome
- Addison’s Disease Self-Help Group
- Advocacy for Neuroacanthocytosis Patients
- Albinism Fellowship UK/Ireland
- Alex TLC (The Leukodystrophy Charity)
- Alkaptonuria Society (AKU)
- ALK Positive Lung Cancer UK
- Alpha-1 UK support Group
- Alport UK
- Alström Syndrome UK
- Amy and Friends
- ANE international (Acute Necrotizing Encephalopathy)
- Angelman UK
- Aniridia Network
- Annabelle’s Challenge
- Anorchidism Support Group (ASG)
- Antenatal Results and Choices (ARC)
- ArchAngel MLD Trust
- Arthur’s Quest / SLC6A1 Support UK
- Ataxia-Telangiectasia Society (AT Society)
- Ataxia UK
B
- Bardet-Biedl Syndrome UK
- Barth Syndrome UK
- Batten Disease Family Association
- Beacon (formerly Findacure)
- Beat SCAD
- Beckwith-Wiedemann Support Group UK
- Behçet’s UK (formerly Behçet’s Syndrome Society)
- BRCA Umbrella
- British Porphyria Association
- Brittle Bone Society
C
- CADASIL Support UK
- Cambridge Rare Disease Network
- Cardiomyopathy UK
- CASK Research UK
- Cavernoma Alliance UK
- CDG UK
- CDLS Foundation UK and Ireland
- Cerebrospinal Fluid Leak Association (CSF)
- CGD Society (Chronic Granulomatous Disorder)
- CHAMP1 Patient Support Group
- Charcot-Marie-Tooth UK
- Child Growth Foundation
- Children’s Hyperinsulinism Charity
- Children’s Liver Disease Foundation
- CJD Support Network UK
- Congenital Adrenal Hyperplasia Support Group
- CRELD1 Warriors
- Cri Du Chat Syndrome Support Group
- CSNK2A1 Foundation
- Cure and Action Tay Sachs (CATS) Foundation
- Cure DHDDS
- CureGRIN Foundation
- Cure Mucolipidosis
- Cure Myotonic Dystrophy UK
- Cure Usher Syndrome
- Cystic Fibrosis Trust
- Cystinosis Foundation UK
D
- DC Action
- DDD/C3G Renal Support Group UK
- DDX3X Support UK
- DEBRA UK
- Diamond Blackfan Anaemia Support Group UK
- Dravet Syndrome UK
- Duchenne Family Support Group (DFSG)
E
- East Lancashire Community Genetics Team
- Ectodermal Dysplasia Society (ED Society)
- Elijah’s Hope CIC
- EOS Network – Eosinophilic Diseases Charity
- Eyes on the Future
F
- Fanconi Hope
- FAP Gene Support Group
- FAR – Foundation for ARID1B Research
- FAST UK – Foundation for Angelman Syndrome Therapeutics
- Fibromuscular Dysplasia Society Of UK & Ireland
- Fibrous Dysplasia Support Society UK (FDSS UK)
- Fight for Sight
- FOP Friends (Fibrodysplasia Ossificans Progressiva)
- Foundation for Prader Willi Research UK
- FSH Muscular Dystrophy Support Group
- Fuchsfriends UK
G
- Galactosaemia Support Group
- GATA2 Deficiency Support Group
- Gene People (previously Genetic Disorders UK)
- GIST Cancer UK
- Glut1 Deficiency UK
- Gorlin Syndrome Group
- GRACE Project
- Great Ormond Street Children’s Charity
- GRI UK
H
- Haemochromatosis UK
- Haemophilia Society
- HAE UK (Hereditary Angioedema)
- Headlines Craniofacial Support
- Hereditary Brain Aneurysm Support (HBA Support)
- Hereditary Spastic Paraplegia (HSP) Support Group
- Huntington’s Disease Association UK
I
- Ichthyosis Support Group
- IIH UK (Idiopathic intracranial hypertension)
- Immunodeficiency UK (replaces PID UK)
- ITP Support Association
J
K
L
- Leber’s Hereditary Optic Neuropathy Society
- Lily Foundation
- Lipodystrophy UK
- Little Heart Matter
- Local Families with Bleeding Disorders
M
- MACS (Microphthalmia, Anophthalmia & Coloboma Support)
- Macular Society
- Making it Better – The Daniel Courtney Trust
- Marfan Trust
- Mast Cell Action
- Max Appeal
- MEBO Research
- Medics for Rare Disease
- MEF2C Foundation
- Metabolic Support UK
- Moebius Research Trust
- Motor Neurone Disease Association
- MPGN/DDD SUPPORT GROUP
- MPS Society
- Muscle Help Foundation
- Muscular Dystrophy UK
- MVA (Mosaic Variegated Aneuploidy) Society
- MyAware
- Myotubular Trust
N
- NAITbabies
- Narcolepsy UK
- National Society for Phenylketonuria (UK) Ltd (NSPKU)
- NCBRS Worldwide Foundation
- Nemaline Myopathy Support Group
- Nephrotic Syndrome Trust
- Nerve Tumours UK
- NF2 BioSolutions UK
- Niemann-Pick UK
- Noonan Syndrome Association
- Northern Ireland Rare Disease Partnership
O
P
- Pallister-Killian Syndrome UK (PKSUK)
- PANS PANDAS UK
- Parathyroid UK (formerly Hypopara UK)
- PCD Research – Primary Ciliary Dyskinesia
- Phelan McDermid Syndrome Foundation UK
- PIP-UK Poland Syndrome Support
- Pitt Hopkins UK
- PNH Support Group
- Polycystic Kidney Disease (PKD) Charity
- Prader Willi Syndrome Association UK
- Primary Ciliary Dyskinesia (PCD) Support UK
- PSC Support Group
- PTEN UK & Ireland Patient Group
- PTLS Hope Research Foundation (Potocki Lupski Syndrome)
- Pulmonary Hypertension Association (PHA UK)
- PXE Support Group
R
- Rare Autoinflammatory Conditions Community (RACC) UK
- Rareminds
- RareQoL Ltd
- Retina UK
- Rett UK
- Reverse Rett
- Ring20 Research & Support UK
S
- SADS UK
- Salivary Gland Cancer UK
- Same but Different
- Sarcoidosis UK
- Scleroderma and Raynaud’s UK
- SCN8A UK & Ireland
- Sense Usher Service
- SJS Awareness UK
- SMC1A Foundation
- SOFT UK
- Special Needs Jungle
- Spinal Muscular Atrophy (SMA) Support UK
- Spotlight YOPD
- Stargardt’s Connected
- Stickler Syndrome UK
- Stiff Person Syndrome
- Syngap1 UK
- Syngap Research Fund
T
- Tango 2 UK
- The Aarskog Foundation
- The Aortic Dissection Charitable Trust
- The Aplastic Anaemia Trust
- The Down’s Syndrome Association
- The Ehlers-Danlos Society
- The Epilepsy Society
- The Fragile X Society
- The Gary Woodward Dyskeratosis Congenita Trust
- The Gauchers Association
- The George Pantziarka TP53 Trust
- The Maddi Foundation
- The Neurological Alliance
- The Sickle Cell Society
- The Smith-Magenis Syndrome Foundation UK
- The UK Mastocytosis Support Group
- Thrombosis UK
- Thrombotic Thrombocytopenic Purpura Network (TTP Network)
- Thyroid UK
- Timothy Syndrome Alliance
- TOFS
- Tourettes Action
- Treat SMA
- TRPS Support Group UK
- Tuberous Sclerosis Association
- Tumour Support Scotland (formerly Funny Lumps)
- Turner Syndrome Support Society (UK)
U
V
W
- Wales Orphan And Rare Lung Disease [WORLD]
- Williams Syndrome Foundation Limited
- Wilson’s Disease Support Group UK
- Wolfram Syndrome UK
- Womb Cancer Support UK
- WomenZone
- Worster-Drought Syndrome Support Group