A-Z directory of member organisations

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

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
Association for Glycogen Storage Diseases 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
CCHS UK (Congenital central hypoventilation syndrome)
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
Costello Kids [International Costello Syndrome Support Group]
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
CUREUsher
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
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)
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

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

Jeune Syndrome Foundation
Jnetics

K

KBG Foundation
Keep Me Breathing
KIF1A.org
Kleefstra Syndrome
Krabbe UK

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
MyAware
Myotonic Dystrophy Support Group
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

Ocumel UK
Osteopetrosis Support Trust

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
Pompe UK
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
Sisters’ Hope Foundation
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

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

UKPIPS
UK Thalassaemia Society
Unique

V

Vasculitits UK
VHL UK/Ireland

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

X

XLH UK (X-Linked Hypophosphatemia)
XLP Research Trust

Y

Yellow Brick Road Project (YBRP)