Organisations
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Action For BPAN
info: Action For BPAN -
Action for Pulmonary Fibrosis
info: Action for Pulmonary Fibrosis -
Action Medical Research
info: Action Medical Research -
Advocacy for Neuroacanthocytosis Patients
info: Advocacy for Neuroacanthocytosis Patients -
Alex, The Leukodystrophy Charity
info: Alex, The Leukodystrophy Charity -
Alexion, AstraZeneca Rare Disease
info: Alexion, AstraZeneca Rare Disease -
All-Ireland Rare Disease Interdisciplinary Research Network (RAIN)
info: All-Ireland Rare Disease Interdisciplinary Research Network (RAIN) -
Alport Research Hub
info: Alport Research Hub -
Alport UK and the Alport Syndrome Alliance
info: Alport UK and the Alport Syndrome Alliance -
Ambrose Healthcare Ltd.
info: Ambrose Healthcare Ltd. -
Association for Multiple Endocrine Neoplasia Disorders (AMEND)
info: Association for Multiple Endocrine Neoplasia Disorders (AMEND) -
Association of British HealthTech Industries
info: Association of British HealthTech Industries -
Association of Medical Research Charities
info: Association of Medical Research Charities -
Association of the British Pharmaceutical Industry
info: Association of the British Pharmaceutical Industry -
ataxia-aware
info: ataxia-aware -
Beacon for Rare Diseases
info: Beacon for Rare Diseases -
BioIndustry Association
info: BioIndustry Association -
brainstrust
info: brainstrust -
Breaking Down Barriers
info: Breaking Down Barriers -
British In Vitro Diagnostic Association
info: British In Vitro Diagnostic Association -
British Paediatric Surveillance Unit (BPSU)
info: British Paediatric Surveillance Unit (BPSU) -
Cambridge Rare DiseaseNetwork (CamRARE)
info: Cambridge Rare DiseaseNetwork (CamRARE) -
Cancer Research UK
info: Cancer Research UK -
CASK Research Foundation
info: CASK Research Foundation -
Cell and Gene Therapy Catapult
info: Cell and Gene Therapy Catapult -
Centres of Excellence for Regulatory Science and Innovation (CERCIs)
info: Centres of Excellence for Regulatory Science and Innovation (CERCIs) -
CGD Society
info: CGD Society -
CHAMP1 UK
info: CHAMP1 UK -
Changing Clinical Practice Through Innovative Trial Designs (CAPTIVATE) Node
info: Changing Clinical Practice Through Innovative Trial Designs (CAPTIVATE) Node -
CHD5 ALLIANCE CIC
info: CHD5 ALLIANCE CIC -
Clever Cogs
info: Clever Cogs -
Cohorts
info: Cohorts -
Congenital Anomaly Register and Information Service (CARIS)
info: Congenital Anomaly Register and Information Service (CARIS) -
Congenital Conditions and Rare Diseases Registration and Information Service for Scotland (CARDRISS)
info: Congenital Conditions and Rare Diseases Registration and Information Service for Scotland (CARDRISS) -
Contact for Families with Disabled Children
info: Contact for Families with Disabled Children -
Costello Medical
info: Costello Medical -
CPA Research Foundation
info: CPA Research Foundation -
CSF Leak Association
info: CSF Leak Association -
Cure DHDDS
info: Cure DHDDS -
Cure EB
info: Cure EB -
Cure NF2 Foundation UK & Europe
info: Cure NF2 Foundation UK & Europe -
Cystinosis Foundation UK
info: Cystinosis Foundation UK -
DEBRA
info: DEBRA -
Department of Health and Social Care
info: Department of Health and Social Care -
Dravet Syndrome UK
info: Dravet Syndrome UK -
Early Assessment, Diagnosis and Treatment of Parkinsonism and Related Syndromes (ExPRESS) Node
info: Early Assessment, Diagnosis and Treatment of Parkinsonism and Related Syndromes (ExPRESS) Node -
EMBL’s European Bioinformatics Institute (EMBL-EBI)
info: EMBL’s European Bioinformatics Institute (EMBL-EBI) -
Epigenomics of Rare Disorders (EpiGenRare) Node
info: Epigenomics of Rare Disorders (EpiGenRare) Node -
eXmoor Pharma
info: eXmoor Pharma -
Eye2Gene Ltd
info: Eye2Gene Ltd -
Fahr Beyond
info: Fahr Beyond -
Fanconi Hope
info: Fanconi Hope -
FOP Friends
info: FOP Friends -
Gene People
info: Gene People -
Genetic Alliance UK
info: Genetic Alliance UK -
Genomics England
info: Genomics England -
George Pantziarka TP53 Trust
info: George Pantziarka TP53 Trust -
GOSH charity
info: GOSH charity -
Guilford Street Labs
info: Guilford Street Labs -
Health and Care Research Wales
info: Health and Care Research Wales -
Health Data Research UK (HDR UK)
info: Health Data Research UK (HDR UK) -
Health Research Authority
info: Health Research Authority -
Hereditary Brain Aneurysm Support (HBA Support)
info: Hereditary Brain Aneurysm Support (HBA Support) -
HOPE for Epilepsy
info: HOPE for Epilepsy -
HSC Research and Development Division (Northern Ireland)
info: HSC Research and Development Division (Northern Ireland) -
Innovate UK
info: Innovate UK -
Innovation hubs for gene therapies
info: Innovation hubs for gene therapies -
Integrated Care Boards (ICBs)
info: Integrated Care Boards (ICBs) -
International Niemann-Pick Disease Registry
info: International Niemann-Pick Disease Registry -
Jeans for Genes
info: Jeans for Genes -
Kidney Research UK
info: Kidney Research UK -
King’s Health Partners Rare Disease Network
info: King’s Health Partners Rare Disease Network -
LAM Action
info: LAM Action -
LifeArc
info: LifeArc -
LifeArc Centre for Rare Mitochondrial Diseases
info: LifeArc Centre for Rare Mitochondrial Diseases -
LifeArc Centre for Rare Respiratory Diseases
info: LifeArc Centre for Rare Respiratory Diseases -
LifeArc Translational Centres for Rare Disease
info: LifeArc Translational Centres for Rare Disease -
Mary Lyon Centre
info: Mary Lyon Centre -
Mediaplanet
info: Mediaplanet -
Medical Research Council
info: Medical Research Council -
Medical Research Foundation (MRF)
info: Medical Research Foundation (MRF) -
Medicines & Healthcare products Regulatory Agency (MHRA)
info: Medicines & Healthcare products Regulatory Agency (MHRA) -
Medicines Discovery Catapult
info: Medicines Discovery Catapult -
Medics for Rare Disease
info: Medics for Rare Disease -
Mendelian
info: Mendelian -
Metabolic Support
info: Metabolic Support -
mTOR Pathway Diseases Node
info: mTOR Pathway Diseases Node -
Multiple System Atrophy Trust
info: Multiple System Atrophy Trust -
MVA Society
info: MVA Society -
National Disease Registration Service (NDRS)
info: National Disease Registration Service (NDRS) -
National Institute for Health and Care Excellence (NICE)
info: National Institute for Health and Care Excellence (NICE) -
National Institute for Health and Care Research
info: National Institute for Health and Care Research -
NHS Research Scotland
info: NHS Research Scotland -
Niemann-Pick UK
info: Niemann-Pick UK -
NIHR Bioresource
info: NIHR Bioresource -
NIHR Innovation Observatory
info: NIHR Innovation Observatory -
Northern Ireland Rare Disease and Congenital Abnormality Registry (NIRADCAR)
info: Northern Ireland Rare Disease and Congenital Abnormality Registry (NIRADCAR) -
Northern Ireland Rare Disease Clinical and Academic Network
info: Northern Ireland Rare Disease Clinical and Academic Network -
Northern Ireland Rare Disease Partnership (NIRDP)
info: Northern Ireland Rare Disease Partnership (NIRDP) -
Nucleic Acid Therapy Accelerator
info: Nucleic Acid Therapy Accelerator -
OpalMedica Limited
info: OpalMedica Limited -
Our Future Health
info: Our Future Health -
Oxford-Harrington Rare Disease Centre
info: Oxford-Harrington Rare Disease Centre -
Patient Led Research Hub
info: Patient Led Research Hub -
Prader Willi Syndrome Association UK
info: Prader Willi Syndrome Association UK -
PrimeRA Pharma Partners
info: PrimeRA Pharma Partners -
PSC Support
info: PSC Support -
PSPA
info: PSPA -
PTEN UK and Ireland Patient Group
info: PTEN UK and Ireland Patient Group -
Rare Disease Collaborative Networks (RDCNs)
info: Rare Disease Collaborative Networks (RDCNs) -
Rare Disease Research Network
info: Rare Disease Research Network -
Rare Disease Research UK
info: Rare Disease Research UK -
Rare Diseases Advisory Group
info: Rare Diseases Advisory Group -
RARE Revolution
info: RARE Revolution -
Rare Therapies Launchpad
info: Rare Therapies Launchpad -
RareMinds
info: RareMinds -
Rarity Life Magazine
info: Rarity Life Magazine -
RD-IMAG (UK Rare Disease International Mirror and Action Group)
info: RD-IMAG (UK Rare Disease International Mirror and Action Group) -
RECORDER group
info: RECORDER group -
Relapsing Polychondritis Awareness and Support
info: Relapsing Polychondritis Awareness and Support -
Retina UK
info: Retina UK -
Reverse Rett
info: Reverse Rett -
Richmond Pharmacology
info: Richmond Pharmacology -
Ring20 Research and Support UK CIO
info: Ring20 Research and Support UK CIO -
SarcoidosisUK
info: SarcoidosisUK -
Sarcoma UK
info: Sarcoma UK -
Scottish Medicines Consortium
info: Scottish Medicines Consortium -
SGS CDMO Solutions
info: SGS CDMO Solutions -
Stemnovate Limited
info: Stemnovate Limited -
SWAN UK
info: SWAN UK -
The All Wales Medicines Strategy Group (AWMSG)
info: The All Wales Medicines Strategy Group (AWMSG) -
The Children’s Hyperinsulinism Charity
info: The Children’s Hyperinsulinism Charity -
The Hereditary Spastic Paraplegia Support Group (UK)
info: The Hereditary Spastic Paraplegia Support Group (UK) -
The Leber’s Hereditary Optic Neuropathy Society
info: The Leber’s Hereditary Optic Neuropathy Society -
The Lily Foundation
info: The Lily Foundation -
The Renal Ciliopathies National Network (CILIAREN) Node
info: The Renal Ciliopathies National Network (CILIAREN) Node -
The Tuberous Sclerosis Association (TSA)
info: The Tuberous Sclerosis Association (TSA) -
The Voltage Gated Calcium Channel Collective (VGCCC)
info: The Voltage Gated Calcium Channel Collective (VGCCC) -
Therapeutic Genomics CoRE
info: Therapeutic Genomics CoRE -
Timothy Syndrome Alliance (TSA)
info: Timothy Syndrome Alliance (TSA) -
trialport
info: trialport -
UK Biobank
info: UK Biobank -
UK Platform of Nucleic Acid Therapy for rare disease treatment (UPNAT) Node
info: UK Platform of Nucleic Acid Therapy for rare disease treatment (UPNAT) Node -
UK Rare Disease Framework Board and Forum
info: UK Rare Disease Framework Board and Forum -
UK Rare Epilepsies Together (UKRET)
info: UK Rare Epilepsies Together (UKRET) -
Unique
info: Unique -
Usher Kids UK
info: Usher Kids UK -
Wales Gene Park
info: Wales Gene Park -
Wellcome
info: Wellcome -
West Midlands Secure Data Environment
info: West Midlands Secure Data Environment -
Wolfram Syndrome UK
info: Wolfram Syndrome UK