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Community Congress Member Roster

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Member Roster

Below is a comprehensive list of Community Congress members.  Each working group is co-chaired by a patient organization participant and industry participant. Working groups engage on an ongoing basis and meet annually in December in Washington, DC. Ultimately, Community Congress serves as a platform for engagement with rare disease stakeholders and provides critical guidance to the Foundation and leadership to the rare disease community. 

For additional information on the Foundation’s Community Congress program or to join the Community Congress, please visit the program’s homepage.  

A roster of all Member Organizations in the Community Congress. Please click through the other tabs to see the composition of each Working Group. 

TypeOrganization
IndustryAcadia Pharmaceuticals
Patient OrganizationAcid Maltase Deficiency Association (AMDA)
Patient OrganizationAcromegaly Community, Inc
Patient OrganizationADNP Kids Research Foundation
Patient OrganizationAdrenal Insufficiency United
Industry AdvaMed
Patient OrganizationAdvocacy & Awareness
for Immune Disorders Association
IndustryAdvocacyWorks
IndustryAgios Pharmaceuticals
Patient OrganizationAislinn’s Wish Foundation
IndustryAkouos
Patient OrganizationAlagille Syndrome Foundation
Patient OrganizationALD Alliance
Patient OrganizationALD Connect
IndustryAlexion Pharmaceuticals
IndustryAlkermes
Patient OrganizationAll Things Kabuki
Other PartnerAlliance for Patient Access
Other PartnerAlliance for Regenerative Medicine
IndustryAlnylam Pharmaceuticals
Patient OrganizationAlpha-1 Foundation
Patient OrganizationAlport Syndrome Foundation
Patient OrganizationAmerican Adrenal Association
Patient OrganizationAmerican Behcet’s Disease Association
Patient OrganizationAmerican Bone Health
Patient Organization American Kidney Fund
Patient OrganizationAmerican Liver Foundation
Patient OrganizationAmerican Porphyria Foundation
IndustryAmgen
IndustryAmicus Therapeutics
Patient OrganizationAmour Science Foundation
Patient OrganizationAmyloidosis Foundation
Patient OrganizationAmyloidosis Research Consortium
Patient OrganizationAnCan
Patient OrganizationAngelman Syndrome Foundation
Patient OrganizationAPBD Research Foundation
Patient OrganizationAppendix Cancer/Psuedomyxoma Peritonei Research Foundation (ACPMP)
IndustryApplied Therapeutics
IndustryArcturus Therapeutics
IndustryArgenx
IndustryAscendis Pharma, Inc.
Patient OrganizationAshley House
Patient OrganizationAssociation for Creatine Deficiencies
IndustryAstellas
IndustryAstria Therapeutics
Patient OrganizationAutism Science Foundation
Patient OrganizationAutoimmune Association
Patient OrganizationAutoimmune Community Institute
Patient OrganizationAutoinflammatory Alliance
Patient OrganizationAvery’s Hope
IndustryAvidity Biosciences
Patient OrganizationAXYS
IndustryAzafaros
Patient Organization BARE Inc
Patient OrganizationBarth Syndrome Foundation
Patient OrganizationBDSRA Foundation
IndustryBeren Therapeutics
Patient OrganizationBest Day Ever Foundation
IndustryBIO
IndustryBioCryst
IndustryBiogen
IndustryBioLaunch Solutions
IndustryBioMarin Pharmaceutical Inc
IndustryBlueprint Medicines
IndustryBoehringer Ingelheim
Patient OrganizationBoomer Esiason Foundation
Patient OrganizationBorn a Hero Research Foundation
Patient OrganizationBPAN Warriors
IndustryBridgeBio
Patient OrganizationC-Path
Patient OrganizationCal Rare
IndustryCalifornia Life Sciences
OtherCanary Advisors
Patient OrganizationCARES Foundation, Inc.
Patient OrganizationCastleman Disease Collaborative Network
Patient OrganizationCDG CARE
Patient OrganizationCenter for Innovation and Value Research (formerly IVI)
Patient OrganizationCFC International
IndustryChiesi USA, Inc.
Patient OrganizationChild Neurology Foundation
Patient OrganizationChildren’s PKU Network
Patient OrganizationChondrosarcoma CS Foundation
Patient OrganizationChoroideremia Research Foundation
Other PartnerClinical and Laboratory Standards Institute (CLSI)
Patient OrganizationColor of Crohn’s and Chronic Illness
Patient OrganizationCongenital Hyperinsulinism International
Patient OrganizationConquer MG
Patient OrganizationCOPD Foundation – Bronchiectasis & NTM Intiative
Patient OrganizationCostello Syndrome Family Network
IndustryCreyone Bio, Inc
IndustryCrinetics Pharmaceutical
IndustryCSL Behring
Patient OrganizationCure CMD
Patient OrganizationCURE GABA-A
Patient OrganizationCure GM1 Foundation
Patient OrganizationCure LGMD2i Foundation
Patient OrganizationCure Mito Foundation
Patient OrganizationCure Sanfilippo Foundation
Patient OrganizationCure SMA
Patient OrganizationCure VCP Disease, Inc.
Patient OrganizationCureDuchenne
Patient OrganizationCuring Retinal Blindness Foundation
Patient OrganizationCyclic Vomiting Syndrome Association
Patient OrganizationCystic Fibrosis Research Institute
Patient OrganizationCystinosis Research Network
Patient OrganizationDana’s Angels Research Trust
Patient OrganizationDanny’s Dose Alliance, Inc
Patient Organizationdebra of America
IndustryDenali Therapeutics
Patient OrganizationDravet Syndrome Foundation
Patient OrganizationDreamsickle Kids Foundation
Patient OrganizationE.WE Foundation
Patient OrganizationEB Research Partnership
Patient OrganizationECD Global Alliance
IndustryEdgewise Therapeutics
Patient OrganizationELI Foundation Puerto Rico
IndustryEli Lilly and Company
IndustryElpida Therapeutics
Patient OrganizationEndosalpingiosis Foundation
IndustryEntrada Therapeutics
Patient OrganizationEosinophilic & Rare Disease Cooperative
Other PartnerEvery Cure
IndustryExact Sciences
Patient OrganizationExpecting Health
Patient OrganizationFabry Support & Information Group
Patient OrganizationFamily Heart Foundation
Patient OrganizationFD/MAS Alliance
Patient OrganizationFibromuscular Dysplasia Society of America
Patient OrganizationFighting for Kaiden Foundation
Patient OrganizationFOP Association
IndustryForge Biologics
Patient OrganizationFoundation Fighting Blindness
Patient OrganizationFoundation for Angelman Syndrome Therapeutics (FAST)
Patient OrganizationFoundation for Sarcoidosis Research (FSR)
Patient OrganizationFoundation to fight H-ABC
Patient OrganizationFriedreich’s Ataxia Research Alliance (FARA)
IndustryFulcrum Therapeutics
Patient Organizationg6pd Deficiency Foundation
Patient OrganizationGalactosemia Foundation
Patient OrganizationGBS|CIDP Foundation Int’l
Patient OrganizationGene Giraffe Project
IndustryGeneDx
IndustryGenentech
IndustryGlaxoSmithKline
Patient OrganizationGlobal Foundation for Peroxisomal Diseases
Patient OrganizationGlobal Genes
Patient OrganizationGlobal Liver Institute
Patient OrganizationGRIN2B Foundation
Patient OrganizationHairy Cell Leukemia Foundation
Patient OrganizationHCU Network America
Patient OrganizationHemophilia Council of California
Patient OrganizationHemophilia Federation of America
Patient OrganizationHermansky-Pudlak Syndrome (HPS) Network
Patient OrganizationHistiocytosis Association
Patient OrganizationHope for Dante’ – Batten Disease Awareness
Patient OrganizationHunter’s Hope Foundation
Patient OrganizationHuntington’s Disease Society of America (HDSA)
IndustryHyman, Phelps & McNamara, P.C.
Patient OrganizationHypersomnia Foundation
Patient OrganizationI Am ALS
Patient OrganizationImmune Deficiency Foundation
IndustryImmunovant
OtherInnov8 Health Policy, LLC
IndustryInsmed
IndustryInstitute for Gene Therapies
Patient OrganizationInternational Cystinuria Foundation
Patient OrganizationInternational Foundation for CDKL5 Research
Patient OrganizationInternational Pemphigus and Pemphigoid Foundation
Patient OrganizationInternational Rett Syndrome Foundation
Patient OrganizationInternational Waldenstrom’s Macroglobulinemia Foundation (IWMF)
IndustryInvitae
IndustryIonis Pharmaceuticals
IndustryIpsen
IndustryIQVIA
Patient OrganizationJack McGovern Coats Disease Foundation
Patient OrganizationJansen’s Foundation
IndustryJazz Therapeutics
Patient OrganizationJett Foundation
IndustryJohnson and Johnson Healthcare Systems
Patient OrganizationJonah’s Just Begun – Curing SanFilippo Disease One Day at a Time
Patient OrganizationJordan’s Guardian Angels
Patient OrganizationJoshua Frase Foundation
Patient OrganizationJuju and Friends CLN2 Warrior Foundation
IndustryKith Collective
Patient OrganizationKrabbeConnect
Patient OrganizationKrishnan Family Foundation
IndustryKyowa Kirin
Patient OrganizationLGMD2D Foundation
Patient OrganizationLi-Fraumeni Syndrome Association
Patient Organization Lipodystrophy United
Patient OrganizationLittle Hercules Foundation
Patient OrganizationLittle Miss Hannah Foundation
Patient OrganizationLittlest Tumor Foundation
IndustryLongboard Pharmaceuticals
Patient OrganizationLowe Syndrome Association
Patient OrganizationLung Transplant Foundation
Patient OrganizationLupus Foundation of America
Patient OrganizationLymphangiomatosis & Gorham’s Disease Alliance (LGDA)
Patient OrganizationMac Pact
IndustryMahzi Therapeutics
IndustryMallinckrodt Pharmaceuticals
Patient OrganizationMarch of Dimes
IndustryMarinus Pharmaceuticals
Patient OrganizationMartin Center Sickle Cell Initiative
Patient OrganizationMarylandRARE
IndustryMerck
Patient OrganizationMinutes Matter – MCADD
Patient OrganizationMission MSA
Patient OrganizationMission: Cure
Patient OrganizationMississippi Metabolics Foundation
Patient OrganizationMitoAction
Patient OrganizationMLD Foundation
Patient OrganizationMTM-CNM Family Connection
Patient OrganizationMTS Sickle Cell Foundation, Inc.
Patient OrganizationMuscular Dystrophy Association (MDA)
Patient OrganizationMyasthenia Gravis Association
Patient OrganizationMyasthenia Gravis Foundation of America
Patient OrganizationMyositis Support and Understanding Association
Patient OrganizationNarcolepsy Network
Patient OrganizationNational Alliance for Caregiving (NAC)
Patient OrganizationNational Ataxia Foundation
Patient OrganizationNational Bleeding Disorders Foundation (formerly NHF)
Patient OrganizationNational Foundation for Ectodermal Dysplasias
Patient OrganizationNational Fragile X Foundation
Patient OrganizationNational Health Council
Patient OrganizationNational Leiomyosarcoma Foundation
Patient OrganizationNational Lymphedema Network
Patient OrganizationNational MPS (Mucopolysaccharidoses) Society
Patient OrganizationNational Niemann-Pick Disease Foundation (NNPDF)
IndustryNational Pharmaceutical Council
Patient OrganizationNational PKU Alliance
Patient OrganizationNational Scleroderma Foundation
IndustryNational Society of Genetic Counselors (NSGC)
Patient OrganizationNational Tay-Sachs & Allied Diseases Association (NTSAD)
Patient OrganizationNational Tay-Sachs & Allied Diseases Association (NTSAD)
Patient OrganizationNephCure for Rare Kidney Disease
Patient OrganizationNetwork of Tyrosinemia Advocates
IndustryNeurocrine Biosciences
Patient OrganizationNeuroimmune Foundation
Patient OrganizationNeuromuscular Disease Foundation
IndustryNovartis
IndustryNovo Nordisk
IndustryNS Pharma
Patient OrganizationNTM Info & Research, Inc.
Patient OrganizationNW Rare Disease Coalition
IndustryOrchard Therapeutics
Patient OrganizationOrganic Acidemia Association
IndustryOtsuka
IndustryOvid Therapeutics
Patient OrganizationOxalosis and Hyperoxaluria Foundation
Patient OrganizationPachyonychia Congenita Project
Patient OrganizationParent Project Muscular Dystrophy (PPMD)
IndustryParexel
Patient OrganizationPartnership to Fight Chronic Disease (PFCD)
Other PartnerPartnership to Improve Patient Care
Patient OrganizationPediatric Hydrocephalus Foundation
Patient OrganizationPeople With Empathy
IndustryPepGen
IndustryPersonalized Medicine Coalition
Patient OrganizationPetronille Healthy Society
Patient OrganizationPFIC Network, Inc.
IndustryPfizer, Inc.
IndustryPharming Healthcare Inc.
IndustryPhRMA
Patient OrganizationPiper’s Kidney Beans
Patient OrganizationPMG Awareness Organization
Patient OrganizationPompe Alliance
Patient OrganizationPrader-Willi Syndrome Association (PWSA)
Patient OrganizationProject Alive
Patient OrganizationPSC Partners Seeking a Cure
IndustryPTC Therapeutics
Patient OrganizationPTEN Hamartoma Tumor Syndrome Foundation
Patient OrganizationPulmonary Fibrosis Foundation
Patient OrganizationPulmonary Hypertension Association
IndustryPWR
Other PartnerRare Access Action Project
Patient OrganizationRare And Black
Patient OrganizationRare and Undiagnosed Network
IndustryRare Disease Company Coalition (RDCC)
Patient OrganizationRare Disease Innovations Institute, Inc.
Patient OrganizationRare KC
Patient OrganizationRare New England
Patient OrganizationRareConnect.org
Patient OrganizationRASOPATHIES Network
IndustryREGENXBIO, Inc.
Patient OrganizationRemember the Girls
OtherReservior Communications Group
IndustryRevvity, Inc.
IndustryRhythm Pharmaceuticals
Patient OrganizationRSDSA.org
Patient OrganizationRyan Foundation
Patient OrganizationRYR-1 Foundation
IndustrySanofi
Patient OrganizationSarcoma Foundation of America
IndustrySarepta Therapeutics
Patient OrganizationSCAD Alliance
IndustryScholar Rock
Patient OrganizationSCID, Angels for Life Foundation
IndustryServier
Patient OrganizationSick Cells
Patient OrganizationSickle Cell Association of Kentuckiana
Patient OrganizationSickle Cell Consortium
Patient OrganizationSickle Cell Disease Association of America
Patient OrganizationSickle Cell Foundation of Tennessee
Patient OrganizationSickle Cell Support Services
Patient OrganizationSister’s Hope Foundation for Hereditary Diffuse Leukoencephalopathy
Patient OrganizationSLC6A1 Connect
Patient OrganizationSmashing Walnuts
IndustrySoleno Therapeutics
IndustrySpark Therapeutics
Patient OrganizationSpastic Paraplegia Foundation, Inc.
Patient OrganizationSpina Bifida Association
Patient OrganizationSSADH Association
IndustryStoke Therapeutics
Patient OrganizationStronger Than Sarcoidosis
Patient OrganizationSTXBP1 Foundation
Patient OrganizationSudden Arrhythmia Death Syndromes (SADS) Foundation
IndustrySumitomo Pharma America
Patient OrganizationSuper T’s Mast Cell Foundation
Patient OrganizationSupporters of Families with Sickle Cell Disease, Inc.
Patient OrganizationSynGAP Research Fund, Inc.
Patient OrganizationSYNGAP1 Foundation
Patient OrganizationT.E.A.M. 4 Travis (Together Ending Asplenia Mortality)
IndustryTakeda Pharmaceuticals
Patient OrganizationTANC2 Foundation
Patient OrganizationTaylor’s Tale
Patient OrganizationTeam Joseph
Patient OrganizationTeam Telomere
Patient OrganizationTeam Titin, Inc.
Patient OrganizationTexas Rare Alliance
Patient OrganizationThe Akari Foundation
Patient OrganizationThe ALS Association
Other PartnerThe Assistance Fund
Patient OrganizationThe Association for Frontotemporal Degenerations
Patient OrganizationThe Bluefield Project to Cure Frontotemporal Dementia
Patient OrganizationThe Bonnell Foundation: Living with Cystic Fibrosis
Patient OrganizationThe Bow Foundation
Patient OrganizationThe Calliope Joy Foundation
Patient OrganizationThe Ehlers-Danos Society
Patient OrganizationThe Firefly Fund
Patient OrganizationThe Julius Louis Happy Little Guy Foundation, Inc.
Patient OrganizationThe LAM Foundation
Patient OrganizationThe Lambert-Eaton LEMS Family Association
Patient OrganizationThe Mast Cell Disease Society
Patient OrganizationThe Myositis Association
Patient OrganizationThe Newborn Foundation
Patient OrganizationThe Speak Foundation
IndustryTravere Therapeutics
IndustryUltragenyx
Patient OrganizationUndiagnosed Diseases Network (UDN)
Patient OrganizationUndiagnosed Diseases Network Foundation (UDNF)
Patient OrganizationUnited Leukodystrophy Foundation
Patient OrganizationUnited Mitochondrial Disease Foundation
Patient OrganizationUnited MSD Foundation
OtherUnited Parcel Service (UPS)
Patient OrganizationUriel Owens Sickle Cell Disease Association of the Midwest
Patient OrganizationUS Hereditary Angioedema Association
Patient OrganizationUS Thrombotic Microangiopathy Alliance (USTMA)
Patient OrganizationVasculitis Foundation
IndustryVertex Pharmaceuticals
IndustryVigil Neuroscience
IndustryViridian Therapeutics
IndustryWave Life Sciences
IndustryWCG Clinical
Patient OrganizationWilliams Syndrome Association
Patient OrganizationWylder Nation Foundation
IndustryZambon
IndustryZevra
Patient OrganizationZTTK SON-Shine Foundation