Organisations

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Action for Pulmonary Fibrosis
Alex, The Leukodystrophy Charity
Alexion, AstraZeneca Rare Disease
All-Ireland Rare Disease Interdisciplinary Research Network (RAIN)
Ambrose Healthcare Ltd.
Association of British HealthTech Industries
Association of Medical Research Charities
Association of the British Pharmaceutical Industry
ataxia-aware
Beacon for Rare Diseases
BioIndustry Association
brainstrust
Breaking Down Barriers
British In Vitro Diagnostic Association
British Paediatric Surveillance Unit (BPSU)
Cambridge Rare DiseaseNetwork (CamRARE)
Cancer Research UK
CASK Research Foundation
Cell and Gene Therapy Catapult
Centres of Excellence for Regulatory Science and Innovation (CERCIs)
CHAMP1 UK
Changing Clinical Practice Through Innovative Trial Designs (CAPTIVATE) Node
Clever Cogs
Congenital Anomaly Register and Information Service (CARIS)
Congenital Conditions and Rare Diseases Registration and Information Service for Scotland (CARDRISS)
Contact for Families with Disabled Children
CRELD1 Warriors
DEBRA
Department of Health and Social Care
Dravet Syndrome UK
Early Assessment, Diagnosis and Treatment of Parkinsonism and Related Syndromes (ExPRESS) Node
EMBL’s European Bioinformatics Institute (EMBL-EBI)
eXmoor Pharma
Fahr Beyond
Fanconi Hope
FOP Friends
Gene People
Genetic Alliance UK
Genomics England
George Pantziarka TP53 Trust
GOSH charity
Health and Care Research Wales
Health Data Research UK (HDR UK)
Health Research Authority
HSC Research and Development Division (Northern Ireland)
Innovate UK
Innovation hubs for gene therapies
Integrated Care Boards (ICBs)
Jeans for Genes
Kidney Research UK
King’s Health Partners Rare Disease Network
LAM Action
LifeArc
LifeArc Translational Centres for Rare Disease
Mary Lyon Centre
Medical Research Council
Medical Research Foundation (MRF)
Medicines & Healthcare products Regulatory Agency (MHRA)
Medicines Discovery Catapult
Medics 4 Rare Disease
Mendelian
Metabolic Support
mTOR Pathway Diseases Node
Multiple System Atrophy Trust
mva society
National Disease Registration Service (NDRS)
National Institute for Health and Care Excellence (NICE)
National Institute for Health and Care Research
NHS Research Scotland
NIHR Bioresource
NIHR Innovation Observatory
Northern Ireland Rare Disease and Congenital Abnormality Registry (NIRADCAR)
Northern Ireland Rare Disease Clinical and Academic Network
Northern Ireland Rare Disease Partnership (NIRDP)
Nucleic Acid Therapy Accelerator
Our Future Health
Oxford-Harrington Rare Disease Centre
Patient Led Research Hub
PrimeRA Pharma Partners
PSPA
PTEN UK and Ireland Patient Group
Rare Disease campaign
Rare Disease Collaborative Networks (RDCNs)
Rare Disease Research Network
Rare Disease Research UK
Rare Diseases Advisory Group
RARE Revolution
Rare Therapies Launchpad
RareMinds
Rarity Life Magazine
RD-IMAG (UK Rare Disease International Mirror and Action Group)
RECORDER group
Reverse Rett
Richmond Pharmacology
Ring20 Research and Support UK CIO
SarcoidosisUK
Scottish Medicines Consortium
SGS CDMO Solutions
Stemnovate Limited
SWAN UK
The All Wales Medicines Strategy Group (AWMSG)
The Children’s Hyperinsulinism Charity
The Leber’s Hereditary Optic Neuropathy Society
The Lily Foundation
The Tuberous Sclerosis Association (TSA)
Therapeutic Genomics CoRE
Timothy Syndrome Alliance (TSA)
UK Biobank
UK Platform of Nucleic Acid Therapy for rare disease treatment (UPNAT) Node
UK Rare Disease Framework Board and Forum
UK Rare Epilepsies Together (UKRET)
Unique
Wales Gene Park
Wellcome