Members and supporters
Chair: Lord Sharkey
Vice Chair: Baroness Wheeler
Patient group members
- Action Duchenne
- aHUSUK – atypical Haemolytic Uraemic Syndrome
- AKU Society
- ALD Life
- Alstrom Syndrome UK
- AMEND – the Association for Multiple Endocrine Neoplasia Disorders
- Anaphylaxis Campaign
- Anthony Nolan
- Aplastic Anaemia Trust
- ArchAngel MLD Trust
- ARMA – Arthritis and Musculoskeletal Alliance
- Arthritis Care
- Association for Glycogen Storage Diseases
- Asthma UK
- BAPEN – British Association for Parenteral & Enteral Nutrition
- Batten Disease Family Association
- BEAT – Eating Disorders Association
- Behcet’s Syndrome Society
- BLISS – premature baby charity
- Bone Cancer Research Trust
- Breathtakers
- British Liver Trust
- British Lung Foundation
- British Paediatric Rheumatology Group
- British Pain Society
- British Polio Fellowship
- British Society for Rheumatology
- Brittle Bone Society
- Cancer52
- Cancer of Unknown Primary
- Changing Faces
- Child’s Liver Disease Foundation
- Child Lung Foundation
- Chronic Granulomatous Disorder Society
- Children’s Heart Federation
- The Children’s Trust
- Chronic Myeloid Leukaemia Support Group
- CLAPA – Cleft Lip and Palate Association
- CLIC Sargent
- Communication Matters
- Contact
- The Cure & Action for Tay-Sachs (CATS) Foundation
- Cystic Fibrosis Trust
- Dementia UK
- The Dystonia Society
- Ehlers Danlos Support Group
- Epilepsy Action
- Epilepsy Society
- Fibrous Dysplasia Support Society UK
- Fight for Sight
- Forum Link
- Gauchers Association
- GAIN – Guillain-Barré & Associated Inflammatory Neuropathies
- Gene People
- GIST Support UK
- Haemophilia Society
- HAE UK
- Hepatitis B Foundation UK
- Hepatitis C Trust
- Ichthyosis Support Group
- Immunodeficiency UK
- International Brain Tumour Alliance
- Kidney Care UK
- Krabbe UK
- Leukaemia Care
- Limbless Association
- LPLD Alliance
- Lymphoma Association
- Macmillan Cancer Support
- Marfan Trust
- Metabolic Support UK
- Motor Neurone Disease Association
- MPS Society
- MS Society
- MS Trust
- Multiple System Atrophy Trust
- Muscular Dystrophy Campaign
- Myeloma UK
- Myrovlytis Trust
- National AIDS Trust
- National Brain Injury Centre, St Andrew’s Healthcare
- National Kidney Federation
- National Rheumatoid Arthritis Society
- National Voices
- The Neuro Foundation
- Neurological Alliance
- Niemann-Pick UK
- Niemann-Pick Research Foundation
- Ovarian Cancer Action
- The Patients Association
- Parkinson’s UK
- Pelvic Radiation Disease Association
- PINNT – Patient on Intravenous and Naso Gastric Nutrition Therapy
- The Pituitary Foundation
- PKD Charity
- PNH Support
- Pompe Support Network
- PoTS (Postural Tachycardia Syndrome) UK
- Progressive Supranuclear Palsy Association
- Pulmonary Hypertension Association
- Queen Elizabeth’s Foundation for disabled people
- Raynaud’s and Scleroderma Association
- Roald Dahl’s Marvellous Children’s Charity
- Sarcoma UK
- Scleroderma and Raynaud’s UK
- SeeAbility
- Sense
- Shine
- Sickle Cell Society
- SignHealth
- Speakability
- Specialist Orthopaedic Alliance
- Spinal Injuries Association
- Spinal Muscular Atrophy UK
- Somerville Foundation
- Teenage Cancer Trust
- Terrence Higgins Trust
- Together For Short Lives
- Tuberous Sclerosis Association
- Turner Syndrome Support Society
- UKPIPS
- UK Acquired Brain Injury Forum
- UK Primary Immunodeficiency Network
- UK Thalassaemia Society
- United Amputees Community Charity
- Vasculitis Awareness Ireland
- Waldenström’s Macroglobulinemia UK
- WellChild
- Young Epilepsy
Corporate supporters
- Amicus Therapeutics
- BioMarin
- CSL Behring
- Janssen
- Gilead
- Novartis
- Takeda
- Vertex
Corporate supporters are contributing £14,500 each towards the costs of the Alliance for 2021.
The secretariat of the Alliance is provided by Incisive Health.
If you have information about provision of specialised services that you would like to bring to our attention or if you would like to know more about the SHCA, please contact us at: team@shca.info