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. 

Organization	Membership Type	NBS WG	PP WG	Reg WG	Access WG
		135	238	192	232
American Brain Coalition	Other	No	Yes	No	Yes
Acadia Pharmaceuticals	Industry	No	No	Yes	Yes
Accessia Health	Other	No	Yes	No	Yes
Acid Maltase Deficiency Association (AMDA)	Patient Org	Yes	No	No	No
Acromegaly Community, Inc	Patient Org	No	Yes	No	No
ADNP Kids Research Foundation	Patient Org	No	No	Yes	Yes
AdvocacyWorks	Industry	No	No	Yes	Yes
Agios Pharmaceuticals	Industry	No	No	Yes	No
Aislinn’s Wish Foundation	Patient Org	Yes	Yes	No	No
Alagille Syndrome Alliance (ALGSA)	Patient Org	No	No	Yes	No
ALD Alliance	Patient Org	Yes	No	No	No
ALD Connect	Patient Org	Yes	No	Yes	No
Alexander Graham Bell Association for the Deaf and Hard of Hearing	Patient Org	Yes	Yes	No	No
Alexion Pharmaceuticals	Industry	No	Yes	Yes	Yes
Alkermes	Industry	No	Yes	Yes	Yes
All Things Kabuki	Patient Org	No	Yes	Yes	No
Alliance for Patient Access	Other	No	No	No	Yes
Alliance for Regenerative Medicine (ARM)	Other	No	Yes	Yes	Yes
Alnylam Pharmaceuticals	Industry	No	Yes	No	Yes
Alpha-1 Foundation	Patient Org	Yes	Yes	No	No
Alport Syndrome Foundation	Patient Org	No	Yes	No	No
Alternating Hemiplegia of Childhood Foundation (AHCF)	Patient Org	Yes	No	No	Yes
ALS Association	Patient Org	No	Yes	Yes	Yes
American Bone Health	Patient Org	No	No	No	Yes
American Kidney Fund	Patient Org	No	Yes	No	No
American Liver Foundation	Patient Org	No	Yes	No	No
American Porphyria Foundation	Patient Org	No	No	Yes	No
Amgen	Industry	No	Yes	Yes	Yes
Amicus Therapeutics Inc.	Industry	No	No	Yes	No
Amour Science Foundation	Patient Org	Yes	No	No	No
Amyloidosis Foundation	Patient Org	No	Yes	Yes	No
Amyloidosis Research Consortium	Patient Org	No	Yes	Yes	No
AnCan	Patient Org	No	Yes	No	Yes
Angelman Syndrome Foundation	Patient Org	Yes	Yes	No	Yes
APBD Research Foundation	Patient Org	No	No	Yes	Yes
Appendix Cancer/Psuedomyxoma Peritonei Research Foundation (ACPMP)	Patient Org	No	No	Yes	Yes
Arcturus Therapeutics	Industry	No	No	Yes	No
Argenx	Industry	Yes	Yes	Yes	Yes
Ascendis Pharma, Inc.	Industry	No	Yes	Yes	Yes
Association for Creatine Deficiencies	Patient Org	Yes	No	No	No
Association for Diagnostics & Laboratory Medicine	Industry	Yes	No	No	No
Astria Therapeutics, Inc.	Industry	No	Yes	No	Yes
Atrium Therapeutics	Industry	No	Yes	Yes	Yes
Autism Science Foundation	Patient Org	No	Yes	No	Yes
Autoimmune Association	Patient Org	Yes	Yes	Yes	Yes
Autoinflammatory Alliance	Patient Org	No	Yes	No	Yes
AUTS2 Research Collaborative	Patient Org	No	No	Yes	Yes
Avery’s Hope	Patient Org	Yes	Yes	No	Yes
Aviva Strategies	Other	No	Yes	Yes	No
Azafaros	Industry	No	No	Yes	Yes
BARE Inc.	Patient Org	Yes	Yes	No	Yes
Barth Syndrome Foundation	Patient Org	No	Yes	Yes	Yes
Bayer Corperation	Industry	No	Yes	Yes	No
BDSRA Foundation	Patient Org	Yes	Yes	No	No
Beren Therapeutics	Industry	No	Yes	No	No
Best Day Ever Foundation	Patient Org	No	No	No	Yes
BioCryst	Industry	No	Yes	Yes	No
Biogen	Industry	No	Yes	No	Yes
BioMarin Pharmaceutical Inc	Industry	Yes	Yes	Yes	Yes
Biotechnology Innovation Organization (BIO)	Industry	No	Yes	Yes	Yes
Blueprint Medicines	Industry	No	Yes	Yes	Yes
Boehringer Ingelheim	Industry	No	No	No	Yes
Boomer Esiason Foundation	Patient Org	Yes	Yes	No	No
Born a Hero Research Foundation	Patient Org	No	Yes	No	Yes
BPAN Warriors	Patient Org	No	No	Yes	Yes
BridgeBio	Industry	No	Yes	Yes	No
Cal Rare	Patient Org	No	Yes	No	Yes
California Life Sciences Association	Industry	No	Yes	No	No
Canary Advisors	Industry	No	Yes	Yes	Yes
Caregiver Action Network	Patient Org	No	Yes	No	No
CARES Foundation, Inc.	Patient Org	No	No	No	Yes
CASK Warriors Foundation	Patient Org	No	Yes	No	Yes
Castleman Disease Collaborative Network	Patient Org	No	Yes	No	Yes
Catalyst Pharmaceuticals	Industry	Yes	No	No	No
CDG CARE	Patient Org	Yes	No	No	Yes
Center for Innovation & Value Research (formerly IVI)	Patient Org	No	No	No	Yes
CFC International	Patient Org	Yes	Yes	No	No
Channeling Hope Foundation	Patient Org	No	Yes	Yes	No
Charcot-Marie-Tooth Association (CMTA)	Patient Org	No	Yes	No	No
Chiesi USA, Inc.	Industry	Yes	Yes	No	No
Child Neurology Foundation	Patient Org	No	Yes	No	Yes
Children’s PKU Network	Patient Org	No	No	No	Yes
Chondrosarcoma CS Foundation	Patient Org	No	Yes	No	Yes
Choroideremia Research Foundation	Patient Org	No	Yes	No	No
Cogent Biosciences	Industry	No	No	Yes	Yes
Color of Crohn’s & Chronic Illness (COCCI)	Patient Org	No	Yes	No	Yes
COMBINEDBrain	Patient Org	No	Yes	Yes	No
Congenital Hyperinsulinism International	Patient Org	No	Yes	No	Yes
Conquer MG	Patient Org	No	Yes	No	No
Cooley’s Anemia Foundation	Patient Org	No	Yes	Yes	No
COPD Foundation – Bronchiectasis & NTM Initiative	Patient Org	Yes	No	Yes	Yes
Costello Syndrome Family Network	Patient Org	No	No	Yes	No
CSL Behring	Industry	No	Yes	Yes	Yes
Cure CMD ((Congenital Muscular Dystrophy))	Patient Org	Yes	No	No	Yes
CURE GABA-A	Patient Org	No	No	Yes	Yes
Cure GM1 Foundation	Patient Org	No	No	No	Yes
Cure GRN	Patient Org	No	Yes	Yes	No
CureMapK8IP3 Foundation	Patient Org	No	No	No	Yes
Cure Mito Foundation	Patient Org	No	Yes	Yes	No
Cure Sanfilippo Foundation	Patient Org	Yes	Yes	Yes	No
Cure SHANK	Patient Org	No	No	Yes	No
Cure SMA	Patient Org	Yes	Yes	No	Yes
Cure Starts Now	Patient Org	No	Yes	Yes	No
Cure VCP Disease	Patient Org	No	No	No	Yes
CureLGMD2i Foundation	Patient Org	No	No	Yes	Yes
Curing Retinal Blindness Foundation	Patient Org	No	No	Yes	No
Cyclic Vomiting Syndrome Association	Patient Org	No	Yes	No	Yes
Cystic Fibrosis Research Institute	Patient Org	No	Yes	No	Yes
Cystinosis Research Network (CRN)	Patient Org	No	Yes	No	No
Dana’s Angels Research Trust	Patient Org	No	Yes	Yes	No
Danaher Corporation	Other	No	Yes	Yes	No
Danny’s Dose Alliance, Inc	Patient Org	No	Yes	No	No
Danon Disease Foundation	Patient Org	No	No	Yes	Yes
debra of America	Patient Org	Yes	Yes	Yes	Yes
DEE-P Connections	Patient Org	No	No	Yes	Yes
Denali Therapeutics	Industry	Yes	No	No	Yes
Don’t Forget Morgan	Patient Org	No	Yes	Yes	No
Dravet Syndrome Foundation	Patient Org	Yes	Yes	Yes	Yes
Dreamsickle Kids Foundation	Patient Org	No	Yes	No	No
EB Research Partnership	Patient Org	No	No	Yes	Yes
ELI Foundation Puerto Rico	Patient Org	No	Yes	No	Yes
Elpida Therapuetics	Industry	No	No	Yes	No
EMD Serono	Other	No	No	No	Yes
Emily’s Entourage	Patient Org	No	No	Yes	No
Endosalpingiosis Foundation	Patient Org	No	Yes	No	Yes
Entrada Therapeutics	Industry	No	No	Yes	No
Eosinophilic & Rare Disease Cooperative	Patient Org	No	Yes	Yes	Yes
Every Cure, Inc.	Other	No	Yes	No	Yes
Expecting Health	Patient Org	Yes	No	No	No
Fabry Support & Information Group	Patient Org	Yes	Yes	No	No
FamilieSCN2A Foundation	Patient Org	No	No	Yes	Yes
Family Heart Foundation	Patient Org	No	No	No	Yes
FD/MAS Alliance	Patient Org	No	Yes	Yes	Yes
Fibromuscular Dysplasia Society of America (FMDSA)	Patient Org	No	No	Yes	Yes
Fighting for Kaiden Foundation, Inc.	Patient Org	No	Yes	No	Yes
Firefly Fund	Patient Org	Yes	No	No	No
Foundation for Angelman Syndrome Therapeutics (FAST)	Patient Org	Yes	Yes	Yes	Yes
Foundation for Sarcodosis Research (FSR)	Patient Org	No	No	Yes	Yes
Foundation to fight H-ABC	Patient Org	No	No	Yes	Yes
Friedreich’s Ataxia Research Alliance (FARA)	Patient Org	Yes	Yes	Yes	Yes
Fulcrum Therapeutics	Industry	No	No	No	Yes
g6pd Deficiency Foundation	Patient Org	Yes	No	No	No
Galactosemia Foundation	Patient Org	No	Yes	Yes	Yes
Gamida Cell	Industry	No	Yes	No	No
GBS\|CIDP Foundation International	Patient Org	No	No	Yes	Yes
Gene Giraffe Project	Patient Org	Yes	No	No	No
Genentech	Industry	No	Yes	Yes	Yes
GlaxoSmithKline	Industry	No	No	No	Yes
Global Foundation for Peroxisomal Diseases	Patient Org	Yes	No	No	Yes
Global Genes	Patient Org	No	Yes	Yes	No
Global Liver Institute	Patient Org	no	Yes	Yes	no
GRIN2B Foundation	Patient Org	Yes	No	No	Yes
Hairy Cell Leukemia Foundation	Patient Org	No	Yes	No	Yes
Hansa Biopharma	Industry	No	Yes	No	Yes
HCU Network America	Patient Org	Yes	No	No	Yes
HD-Care – Huntington’s Disease Awareness	Patient Org	No	Yes	No	No
Hemophilia Council of California	Patient Org	No	Yes	No	Yes
Hemophilia Federation of America	Patient Org	No	No	Yes	Yes
Hermansky-Pudlak Syndrome (HPS) Network	Patient Org	No	No	No	Yes
Histiocytosis Association	Patient Org	No	Yes	Yes	No
Hope For Dante’	Patient Org	Yes	No	No	No
Hunter’s Hope Foundation	Patient Org	Yes	No	No	Yes
Huntington’s Disease Society of America (HDSA)	Patient Org	No	Yes	No	Yes
Hyman, Phelps & McNamara, P.C.	Industry	No	Yes	Yes	No
HypoPARAthyroidism Association	Patient Org	No	Yes	No	Yes
I Am ALS	Patient Org	No	No	No	Yes
Illumina	Industry	Yes	Yes	No	No
Immune Deficiency Foundation (IDF)	Patient Org	Yes	Yes	Yes	Yes
Immunovant	Industry	No	No	No	Yes
Incyte	Industry	No	No	Yes	Yes
Inflection Medicine	Other	Yes	Yes	Yes	Yes
Innov8 Health Policy, LLC	Other	No	Yes	No	Yes
Insmed	Industry	Yes	No	No	No
Institute for Gene Therapies	Industry	No	No	No	Yes
International Cystinuria Foundation	Patient Org	No	No	No	Yes
International Fibrodysplasia Ossificans Progressiva (FOP) Association	Patient Org	No	No	Yes	No
International FOXP1 Syndrome	Patient Org	No	Yes	Yes	No
International Foundation for CDKL5 Research	Patient Org	Yes	Yes	No	No
International Pemphigus & Pemphigoid Foundation (IPPF)	Patient Org	No	No	Yes	No
International Rett Syndrome Foundation	Patient Org	Yes	Yes	Yes	Yes
International Waldenstrom’s Macroglobulinemia Foundation (IWMF)	Patient Org	Yes	Yes	Yes	No
Ionis	Industry	No	Yes	Yes	No
Ipsen Biopharmaceuticals Inc	Industry	Yes	Yes	Yes	Yes
IQVIA	Industry	No	Yes	Yes	No
ITF Therapeutics	Industry	No	No	Yes	Yes
J&J Healthcare Systems	Industry	Yes	Yes	Yes	No
Jack Bear Foundation	Patient Org	Yes	No	No	No
Jack McGovern Coats’ Disease Foundation	Patient Org	No	No	No	Yes
Jade Biosciences	Industry	No	No	Yes	No
Jazz Pharmaceuticals	Industry	No	No	No	Yes
JLS Consulting	Other	No	No	No	Yes
Jonah’s Just Begun	Patient Org	Yes	No	No	No
Jordan’s Guardian Angels	Patient Org	Yes	No	Yes	Yes
Joshua Frase Foundation	Patient Org	Yes	Yes	Yes	No
Juju and Friends CLN2 Warrior Foundation	Patient Org	No	Yes	Yes	No
Kaya Girl Legacy	Patient Org	Yes	No	No	No
Keenova Therapeutics	Industry	No	No	No	Yes
KIF1A.ORG	Patient Org	No	No	Yes	Yes
Kith Collective	Industry	Yes	No	Yes	No
KMT2C Foundation	Patient Org	Yes	No	No	No
KrabbeConnect	Patient Org	Yes	Yes	No	Yes
Krishnan Family Foundation	Patient Org	No	No	No	Yes
Kyowa Kirin International	Industry	Yes	No	Yes	Yes
Kyverna Therapeutics	Industry	No	No	No	Yes
Lexeo Therapeutics	Industry	No	No	Yes	Yes
LGMD2D Foundation	Patient Org	No	Yes	Yes	No
Li-Fraumeni Syndrome Association	Patient Org	Yes	No	No	Yes
Lilly	Industry	Yes	No	No	Yes
Lipodystrophy United	Patient Org	Yes	Yes	No	No
Liquidia	Industry	No	Yes	No	No
Little Hercules Foundation	Patient Org	Yes	Yes	No	Yes
Little Miss Hannah Foundation	Patient Org	Yes	No	No	Yes
Littlest Tumor Foundation	Patient Org	No	Yes	No	Yes
Lowe Syndrome Association	Patient Org	No	Yes	No	Yes
Lundbeck Pharmaceuticals	Industry	No	No	Yes	No
Lung Transplant Foundation	Patient Org	No	Yes	No	Yes
Lupus Foundation of America	Patient Org	No	No	Yes	No
Mac Pact	Patient Org	No	No	Yes	Yes
Mahzi Therapeutics	Industry	Yes	Yes	Yes	No
March of Dimes	Patient Org	Yes	No	No	No
Martin Center Sickle Cell Initiative	Patient Org	Yes	No	No	No
MarylandRARE	Patient Org	Yes	Yes	No	No
Masse World	Patient Org	No	Yes	No	Yes
Merck	Industry	No	Yes	Yes	Yes
Mighty Therapeutics	Industry	No	Yes	Yes	Yes
Minutes Matter – MCADD	Patient Org	Yes	No	No	No
Mission MSA	Patient Org	No	No	Yes	Yes
Mission: Cure	Patient Org	No	Yes	Yes	No
Mississippi Metabolics Foundation	Patient Org	Yes	No	No	No
MitoAction	Patient Org	Yes	Yes	No	Yes
MLD Foundation	Patient Org	Yes	Yes	No	Yes
Moderna Therapeutics	Industry	Yes	No	No	Yes
MTM-CNM Family Connection	Patient Org	Yes	No	Yes	No
MTS Sickle Cell Foundation, Inc.	Patient Org	Yes	No	No	Yes
Muscular Dystrophy Association (MDA)	Patient Org	Yes	No	Yes	No
Myasthenia Gravis Association	Patient Org	No	No	Yes	Yes
Myasthenia Gravis Foundation of America	Patient Org	No	No	Yes	Yes
Myositis Support and Understanding Association	Patient Org	No	No	Yes	Yes
National Alliance for Caregiving (NAC)	Patient Org	Yes	No	No	No
National Ataxia Foundation	Patient Org	Yes	Yes	Yes	Yes
National Bleeding Orders Foundation (formerly NHF)	Patient Org	No	Yes	No	Yes
National Foundation for Ectodermal Dysplasias	Patient Org	No	Yes	Yes	Yes
National Fragile X Foundation	Patient Org	No	Yes	No	Yes
National Health Council	Patient Org	No	Yes	Yes	No
National Leiomyosarcoma Foundation	Patient Org	No	Yes	Yes	No
National Lymphedema Network	Patient Org	No	Yes	No	No
National MPS Society	Patient Org	Yes	Yes	Yes	Yes
National Niemann-Pick Disease Foundation (NNPDF)	Patient Org	Yes	No	Yes	No
National Pharmaceutical Council (NPC)	Industry	No	Yes	Yes	Yes
National PKU Alliance	Patient Org	Yes	Yes	Yes	Yes
National Scleroderma Foundation	Patient Org	No	Yes	No	No
National Society of Genetic Counselors	Industry	No	Yes	No	Yes
National Tay-Sachs & Allied Diseases Association (NTSAD)	Patient Org	Yes	No	Yes	No
National Urea Cycle Disorders Foundation	Patient Org	Yes	Yes	No	No
NephCure for Rare Kidney Disease	Patient Org	No	Yes	No	Yes
Neurocrine Biosciences	Industry	No	Yes	No	Yes
Neuroimmune Foundation (*NAAPA/PANS group)	Patient Org	No	Yes	Yes	Yes
Neuromuscular Disease Foundation (NDF)	Patient Org	No	Yes	Yes	No
NGLY1.org	Patient Org	No	Yes	No	No
Novartis Gene Therapies	Industry	Yes	Yes	Yes	Yes
NS Pharma	Industry	Yes	Yes	No	Yes
NTM Info & Research, Inc.	Patient Org	No	Yes	Yes	No
NW Rare Disease Coalition	Patient Org	Yes	Yes	No	Yes
Odylia	Other	No	No	Yes	No
Oklahoma Rare	Patient Org	Yes	No	No	No
Orchard Therpeutics	Industry	Yes	No	No	No
Organic Acidemia Association	Patient Org	Yes	No	No	Yes
Orsini Rare Disease Pharmacy Solutions	Other	No	Yes	No	Yes
Otsuka America Pharmaceutical, Inc.	Industry	No	Yes	Yes	Yes
Ovid Therapeutics	Industry	No	No	Yes	No
Oxalosis and Hyperoxaluria Foundation	Patient Org	No	No	Yes	No
Pachyonychia Congenita (PC) Project	Patient Org	No	No	Yes	Yes
Palvella Therapeutics	Industry	No	No	Yes	No
PAN Foundation	Patient Org	No	Yes	Yes	No
Parent Project Muscular Dystrophy (PPMD)	Patient Org	Yes	Yes	Yes	Yes
Parexel	Industry	No	No	Yes	Yes
Partnership to Fight Chronic Disease (PFCD)	Patient Org	No	Yes	No	Yes
Partnership to Improve Patient Care (PIPC)	Other	No	Yes	No	Yes
Pathways for Rare and Orphan Solutions	Patient Org	No	Yes	No	Yes
Pediatric Hydrocephalus Foundation	Patient Org	Yes	No	No	No
Penn Quarter Partners	Industry	No	Yes	No	Yes
PepGen Inc.	Industry	No	No	Yes	No
Personalized Medicine Coalition	Industry	No	Yes	No	No
Petronille Healthy Society	Patient Org	Yes	Yes	No	No
Pfizer Inc	Industry	No	Yes	No	Yes
Pharming Healthcare Inc.	Industry	No	No	Yes	Yes
PhRMA	Industry	No	Yes	Yes	Yes
Pierre Fabre Pharmaceuticals	Industry	No	Yes	No	No
Piper’s Kidney Beans	Patient Org	No	No	No	Yes
Plasminogen Deficiency Foundation	Patient Org	No	Yes	No	Yes
PMG Awareness Organization	Patient Org	No	No	No	Yes
Pompe Alliance	Patient Org	No	No	No	Yes
Prader-Willi Syndrome Association (PWSA)	Patient Org	Yes	Yes	Yes	Yes
Progressive Familial Intrahepatic Cholestasis Advocacy & Resource Network, Inc (PFIC Network, Inc)	Patient Org	No	No	Yes	Yes
Project Alive	Patient Org	Yes	No	Yes	Yes
Protara Therapeutics	Industry	No	No	No	Yes
PSC Partners Seeking a Cure	Patient Org	No	Yes	Yes	No
PTC Therapeutics	Industry	No	No	Yes	Yes
PTEN Hamartoma Tumor Syndrome Foundation	Patient Org	Yes	Yes	No	No
Pulmonary Fibrosis Foundation	Patient Org	No	No	Yes	No
Pulmonary Hypertension Association	Patient Org	No	No	No	Yes
PWR	Industry	No	Yes	Yes	Yes
Rare Access Action Project (RAAP)	Other	Yes	Yes	Yes	Yes
Rare and Black	Patient Org	Yes	Yes	No	Yes
Rare and Undiagnosed Network	Patient Org	No	Yes	Yes	No
Rare Disease Company Coaltion (RDCC)	Other	No	Yes	Yes	No
Rare Disease Diversity Coalition	Patient Org	No	Yes	No	Yes
Rare Disease Innovations Institute, Inc.	Patient Org	Yes	No	No	Yes
Rare KC	Patient Org	Yes	No	No	Yes
Rare New England	Patient Org	Yes	Yes	Yes	Yes
RASOPATHIES Network	Patient Org	No	No	Yes	No
Raymond A Wood Foundation	Patient Org	No	No	Yes	Yes
Real Chemistry	Other	No	Yes	Yes	No
Recordati	Industry	No	Yes	No	Yes
Regeneron	Industry	No	Yes	Yes	Yes
REGENXBIO, Inc	Industry	Yes	Yes	Yes	Yes
Remember the Girls	Patient Org	Yes	Yes	No	No
Revvity	Industry	Yes	Yes	No	No
Rezolute	Industry	No	No	Yes	No
RFC-1 Foundation	Patient Org	No	No	Yes	Yes
Rhythm Pharmaceuticals	Industry	No	No	Yes	No
Rocket Pharmaceuticals	Industry	No	Yes	Yes	Yes
RTW Foundation	Other	No	Yes	Yes	No
RYR-1 Foundation	Patient Org	No	Yes	No	Yes
Sanofi	Industry	Yes	Yes	Yes	Yes
Sarcoma Foundation of America	Patient Org	No	Yes	No	No
Sarepta Therapeutics	Industry	Yes	Yes	Yes	Yes
Savara	Industry	No	No	No	Yes
SCAD Alliance	Patient Org	No	Yes	No	No
Scholar Rock	Industry	No	Yes	No	Yes
SCID Foundation	Patient Org	Yes	No	No	No
Servier Pharmaceuticals	Industry	Yes	Yes	Yes	Yes
Shionogi	Industry	No	Yes	No	No
Sick Cells	Patient Org	No	No	No	Yes
Sickle Cell Association of Kentuckiana	Patient Org	Yes	No	No	No
Sickle Cell Consortium	Patient Org	No	Yes	Yes	No
Sickle Cell Disease Association of America (SCDAA)	Patient Org	No	Yes	No	No
Sickle Cell Foundation of Tennessee	Patient Org	No	Yes	No	No
Sister’s Hope Foundation for Hereditary Diffuse Leukoencephalopathy	Patient Org	No	No	Yes	Yes
SLC6A1 Connect	Patient Org	No	No	Yes	Yes
Sleep Consortium	Other	No	No	Yes	Yes
Smashing Walnuts	Patient Org	No	No	No	Yes
Sobi	Industry	No	Yes	No	Yes
Society for Participatory Medicine	Other	No	Yes	No	No
Soleno Therapeutics	Industry	No	Yes	No	Yes
Solid Biosciences	Industry	No	Yes	Yes	No
South Carolina Rare	Patient Org	Yes	Yes	Yes	Yes
Spastic Paraplegia Foundation	Patient Org	No	Yes	Yes	No
Spina Bifida Association	Patient Org	No	No	No	Yes
SSADH Association	Patient Org	Yes	No	No	No
Stoke Therapeutics	Industry	Yes	Yes	Yes	Yes
Stronger Than Sarcoidosis	Patient Org	No	Yes	Yes	No
STXBP1 Foundation	Patient Org	Yes	No	No	No
Sudden Arrhythmia Death Syndromes (SADS) Foundation	Patient Org	No	Yes	No	Yes
Sumitomo Pharma America	Industry	No	No	No	Yes
Super T’s Mast Cell Foundation	Patient Org	No	Yes	No	Yes
Supporters of Families with Sickle Cell Disease, Inc.	Patient Org	No	Yes	No	No
SynGAP Research Fund	Patient Org	Yes	No	Yes	Yes
T.E.A.M. 4 Travis (Together Ending Asplenia Mortality)	Patient Org	Yes	No	No	No
Takeda Pharmaceuticals	Industry	Yes	Yes	No	No
TANC2 Foundation	Patient Org	No	No	No	Yes
Taylor’s Tale	Patient Org	Yes	Yes	Yes	Yes
Team Joseph	Patient Org	No	No	No	Yes
Team Telomere	Patient Org	No	Yes	Yes	No
Team Titin	Patient Org	No	Yes	No	No
Tenaya Therapeutics	Industry	No	No	Yes	No
The Akari Foundation	Patient Org	Yes	Yes	Yes	Yes
The ARK Foundation	Patient Org	No	Yes	No	No
The Association for Frontotemporal Degenerations	Patient Org	No	Yes	No	No
The Bluefield Project to Cure Frontotemporal Dementia	Patient Org	No	No	Yes	No
The Bonnell Foundation: Living with Cystic Fibrosis	Patient Org	Yes	No	Yes	No
The Bow Foundation	Patient Org	No	Yes	No	No
The E.WE Foundation	Patient Org	Yes	Yes	No	No
The Ehlers-Danos Society	Patient Org	No	Yes	No	Yes
The Hope Project for Kids	Patient Org	Yes	Yes	No	No
The Jansen’s Foundation	Patient Org	Yes	No	No	No
The Julius Louis Happy Little Guy Foundation	Patient Org	Yes	No	No	No
The Kennedy Ladd Foundation	Patient Org	Yes	Yes	No	No
The LAM Foundation	Patient Org	No	No	No	Yes
The Lambert-Eaton LEMS Family Association	Patient Org	No	Yes	No	Yes
The LLC Foundation	Patient Org	Yes	Yes	No	No
The Mast Cell Disease Society	Patient Org	No	Yes	No	Yes
The Myositis Association	Patient Org	No	No	Yes	No
The Network of Tyrosinemia Advocates	Patient Org	Yes	No	No	No
The Newborn Foundation	Patient Org	Yes	Yes	No	No
The PACE Foundation	Patient Org	No	Yes	Yes	No
The Ryan Foundation	Patient Org	Yes	Yes	No	No
The Speak Foundation	Patient Org	No	Yes	Yes	Yes
Think of Me Please	Patient Org	No	Yes	No	Yes
Travere Therapeutics	Industry	Yes	Yes	Yes	Yes
UCB	Industry	No	Yes	No	No
Ultragenyx	Industry	Yes	No	Yes	No
Uncommon Cures	Other	Yes	No	No	Yes
Undiagnosed Diseases Network Foundation (UDNF)	Patient Org	Yes	Yes	Yes	Yes
United Leukodystrophy Foundation	Patient Org	No	No	No	Yes
United Mitochondrial Disease Foundation (UMDF)	Patient Org	Yes	Yes	Yes	Yes
United MSD Foundation	Patient Org	Yes	No	No	Yes
UniQure	Industry	No	No	No	Yes
Uriel Owens Sickle Cell Disease Association of the Midwest	Patient Org	No	No	Yes	No
US Hereditary Angioedema Association (HAEA)	Patient Org	No	Yes	Yes	Yes
US Thrombotic Microangiopathy Alliance (USTMA)	Patient Org	No	Yes	Yes	No
Vasculitis Foundation	Patient Org	No	Yes	No	Yes
Vima Therapeutics	Industry	No	Yes	Yes	No
Viridian Therapeutics	Industy	No	No	No	Yes
Wave Life Sciences	Industry	No	Yes	Yes	No
Wisconsin Rare Disease Alliance	Patient Org	Yes	No	No	Yes
Wiskott Aldrich Foundation	Patient Org	No	No	No	Yes
Worldwide Clinical Trials	Other	No	Yes	Yes	No
Wylder Nation Foundation	Patient Org	No	Yes	Yes	No
XLH Network	Patient Org	Yes	Yes	No	No
ZS	Other	No	Yes	Yes	No