Rare Disease Congressional Caucus Members

View Rare Disease Congressional Caucus members, including House and Senate leadership and full membership, working to raise awareness for the rare disease community.

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Thank you to our Rare Disease Congressional Caucus Co-Chairs:

Representative Gus Bilirakis (FL-12)

Representative Doris Matsui (CA-7)

Senator Amy Klobuchar (MN)

Senator Roger Wicker (MS)

House

House Co-Chairs: Representatives Doris Matsui (D-CA) and Gus Bilirakis (R-FL)

Full House Membership:

Type	Organization
Industry	AdvaMed
Industry	AdvocacyWorks
Industry	Agios Pharmaceuticals
Industry	Alexion Pharmaceuticals
Industry	Alkermes
Industry	Amgen
Industry	Amicus Therapeutics
Industry	Applied Therapeutics
Industry	Argenx
Industry	Avidity Biosciences
Industry	Azafaros
Industry	Biogen
Industry	BioMarin Pharmaceuticals
Industry	Biotechnology Innovation Organization (BIO)
Industry	Blueprint Medicines
Industry	BridgeBio
Industry	Creyone Bio, Inc
Industry	CSL Behring
Industry	Edgewise Therapeutics
Industry	Elpida Therapeutics
Industry	Genentech
Industry	Hyman, Phelps & McNamara, P.C.
Industry	Ionis Pharmaceuticals
Industry	Ipsen Biopharmaceuticals Inc
Industry	IQVIA
Industry	J&J Healthcare Systems
Industry	Kith Collective
Industry	Lilly
Industry	Longboard Pharmaceuticals
Industry	Mahzi Therapeutics
Industry	Mallinckrodt Pharmaceuticals
Industry	National Pharmaceutical Council
Industry	National Society of Genetic Counselors (NSGC)
Industry	Novartis
Industry	NS Pharma
Industry	Otsuka
Industry	Ovid Therapeutics
Industry	Parexel
Industry	PepGen
Industry	PhRMA
Industry	PTC Therapeutics
Industry	PWR
Industry	Rare Disease Company Coalition (RDCC)
Industry	REGENXBIO, Inc
Industry	Rhythm Pharmaceuticals
Industry	Sanofi
Industry	Sarepta Therapeutics
Industry	Stoke Therapeutics
Industry	Sumitomo Pharma America (SMPA)
Industry	Travere Therapeutics
Industry	Ultragenyx
Industry	Vigil Neuroscience
Industry	Wave Life Sciences
Industry	WCG Clinical
Industry	Zambon
Industry	Zevra
Industry	Ascendis Pharma
Other	Alliance for Regenerative Medicine
Other	Canary Advisors
Other	Rare Access Action Project
Other	Reservior Communications Group
Other	United Parcel Service (UPS)
Patient Organization	ADNP Kids Research Foundation
Patient Organization	Alagille Syndrome Alliance
Patient Organization	ALD Connect
Patient Organization	All Things Kabuki
Patient Organization	American Porphyria Foundation
Patient Organization	Amyloidosis Foundation
Patient Organization	Amyloidosis Research Consortium
Patient Organization	APBD Research Foundation
Patient Organization	Appendix Cancer/Psuedomyxoma Peritonei Research Foundation (ACPMP)
Patient Organization	Autoimmune Association
Patient Organization	Barth Syndrome Foundation
Patient Organization	BPAN Warriors
Patient Organization	C-Path
Patient Organization	COPD Foundation-Bronch & NTM Initiative
Patient Organization	Costello Syndrome Family Network
Patient Organization	CURE GABA-A
Patient Organization	Cure LGMD2i Foundation
Patient Organization	Cure Mito Foundation
Patient Organization	Curing Retinal Blindness Foundation
Patient Organization	Dana’s Angels Research Trust
Patient Organization	debra of America
Patient Organization	Dravet Syndrome Foundation
Patient Organization	EB Research Partnership
Patient Organization	FD/MAS Alliance
Patient Organization	Fibromuscular Dysplasia Society of America
Patient Organization	Foundation Fighting Blindness
Patient Organization	Foundation for Angelman Syndrome Therapeutics (FAST)
Patient Organization	Foundation to fight H-ABC
Patient Organization	Friedreich’s Ataxia Research Alliance
Patient Organization	Galactosemia Foundation
Patient Organization	GBS\|CIDP Foundation Int’l
Patient Organization	Global Liver Institute
Patient Organization	Hemophilia Federation of America
Patient Organization	Histiocytosis Association
Patient Organization	Immune Deficiency Foundation (IDF)
Patient Organization	International Fibrodysplasia Ossificans Progressiva (FOP) Association
Patient Organization	International Pemphigus and Pemphigoid Foundation
Patient Organization	International Rett Syndrome Foundation
Patient Organization	International Waldenstrom’s Macroglobulinemia Foundation (IWMF)
Patient Organization	Jordan’s Guardian Angels
Patient Organization	Joshua Frase Foundation
Patient Organization	Juju and Friends CLN2 Warrior Foundation
Patient Organization	LGMD2D Foundation
Patient Organization	Lupus Foundation of America
Patient Organization	Lymphangiomatosis & Gorham’s Disease Alliance
Patient Organization	Mac Pact
Patient Organization	MarylandRARE
Patient Organization	Mission MSA
Patient Organization	Mission: Cure
Patient Organization	MTM-CNM Family Connection
Patient Organization	Muscular Dystrophy Association
Patient Organization	Myasthenia Gravis Association
Patient Organization	Myasthenia Gravis Foundation of America
Patient Organization	Myositis Support and Understanding Association
Patient Organization	National Ataxia Foundation
Patient Organization	National Health Council
Patient Organization	National Leiomyosarcoma Foundation
Patient Organization	National MPS Society
Patient Organization	National Niemann-Pick Disease Foundation
Patient Organization	National PKU Alliance
Patient Organization	National Tay-Sachs & Allied Diseases Association (NTSAD)
Patient Organization	Neuroimmune Foundation
Patient Organization	Neuromuscular Disease Foundation
Patient Organization	NTM Info & Research, Inc
Patient Organization	Oxalosis and Hyperoxaluria Foundation
Patient Organization	Pachyonychia Congenita Project
Patient Organization	Parent Project Muscular Dystrophy (PPMD)
Patient Organization	People With Empathy
Patient Organization	Prader-Willi Syndrome Association (PWSA)
Patient Organization	Project Alive
Patient Organization	PSC Partners Seeking a Cure
Patient Organization	Pulmonary Fibrosis Foundation
Patient Organization	Rare & Undiagnosed Network
Patient Organization	Rare New England
Patient Organization	RASOPATHIES Network
Patient Organization	Sickle Cell Consortium
Patient Organization	Sister’s Hope Foundation for Hereditary Diffuse Leukoencephalopathy
Patient Organization	SLC6A1 Connect
Patient Organization	Spastic Paraplegia Foundation, Inc.
Patient Organization	Stronger Than Sarcoidosis
Patient Organization	SynGAP Research Fund, Inc
Patient Organization	Taylor’s Tale
Patient Organization	Team Telomere
Patient Organization	Texas Rare Alliance
Patient Organization	The Akari Foundation
Patient Organization	The ALS Association
Patient Organization	The Bluefield Project to Cure Frontotemporal Dementia
Patient Organization	The Bonnell Foundation: Living with Cystic Fibrosis
Patient Organization	The Myositis Association
Patient Organization	Undiagnosed Diseases Network Foundation (UDNF)
Patient Organization	United Mitochondrial Disease Foundation
Patient Organization	Uriel Owens Sickle Cell Disease Association of the Midwest
Patient Organization	US Hereditary Angiodema Association
Patient Organization	US Thrombotic Microangiopathy Alliance (USTMA)
Patient Organization	Wylder Nation Foundation

Senate

Senate Co-Chairs: Senators Roger Wicker (R-MS) and Amy Klobuchar (D-MN)

Full Senate Membership:

Type	Organization(supporter)
Industry	Akouos
Industry	Alexion Pharmaceuticals
Industry	Amgen
Industry	Arcturus Therapeutics
Industry	Argenx
Industry	Chiesi USA, Inc.
Industry	Denali Therapeutics
Industry	Edgewise Therapeutics
Industry	Exact Sciences
Industry	Forge Biologics
Industry	GeneDx
Industry	Insmed
Industry	Ipsen Biopharmaceuticals Inc
Industry	J&J Healthcare Systems
Industry	Kith Collective
Industry	Kyowa Kirin International
Industry	Mahzi Therapeutics
Industry	Neurocrine Biosciences
Industry	Novartis
Industry	Orchard Therapeutics
Industry	Pharming Healthcare, Inc.
Industry	PWR
Industry	REGENXBIO, Inc
Industry	Revvity, Inc.
Industry	Sanofi
Industry	Sarepta Therapeutics
Industry	Spark Therapeutics
Industry	Takeda Pharmaceuticals
Industry	Travere Therapeutics
Industry	Ultragenyx
Other Partner	Clinical and Laboratory Standards Institute (CLSI)
Other Partner	Rare Access Action Project
Patient Organization	Acid Maltase Deficiency Association
Patient Organization	Adrenal Insufficiency United
Patient Organization	Aislinn’s Wish Foundation
Patient Organization	ALD Alliance
Patient Organization	ALD Connect
Patient Organization	Alpha-1 Foundation
Patient Organization	Amour Science Foundation
Patient Organization	Angelman Syndrome Foundation
Patient Organization	Ashley House
Patient Organization	Association for Creatine Deficiencies
Patient Organization	Autoimmune Association
Patient Organization	Avery’s Hope
Patient Organization	BARE Inc
Patient Organization	BDSRA Foundation
Patient Organization	Boomer Esiason Foundation
Patient Organization	CDG CARE
Patient Organization	CFC International
Patient Organization	Cure CMD
Patient Organization	Cure Sanfilippo Foundation
Patient Organization	Cure SMA
Patient Organization	debra of America
Patient Organization	E.WE Foundation
Patient Organization	Expecting Health
Patient Organization	Fabry Support & Information Group
Patient Organization	Foundation for Angelman Syndrome Therapeutics (FAST)
Patient Organization	Friedreich’s Ataxia Research Alliance (FARA)
Patient Organization	g6pd Deficiency Foundation
Patient Organization	Gene Giraffe Project
Patient Organization	Global Foundation for Peroxisomal Disorders
Patient Organization	GRIN2B Foundation
Patient Organization	HCU Network America
Patient Organization	Hope For Dante’ – Batten Disease Awareness
Patient Organization	Hunter’s Hope Foundation
Patient Organization	Immune Deficiency Foundation
Patient Organization	International Foundation for CDKL5 Research
Patient Organization	International Waldenstrom’s Macroglobulinemia Foundation (IWMF)
Patient Organization	Jansen’s Foundation
Patient Organization	Jonah’s Just Begun – Curing SanFilippo Disease One Day at a Time
Patient Organization	Jordan’s Guardian Angels
Patient Organization	Joshua Frase Foundation
Patient Organization	KrabbeConnect
Patient Organization	Li-Fraumeni Syndrome Association
Patient Organization	Lipodystrophy United
Patient Organization	Little Hercules Foundation
Patient Organization	Little Miss Hannah Foundation
Patient Organization	March of Dimes
Patient Organization	Martin Center Sickle Cell Initiative
Patient Organization	Minutes Matter – MCADD
Patient Organization	Mississippi Metabolics Foundation
Patient Organization	MitoAction
Patient Organization	MLD Foundation
Patient Organization	MTM-CNM Family Connection
Patient Organization	MTS Sickle Cell Foundation, Inc.
Patient Organization	Muscular Dystrophy Association
Patient Organization	National Alliance for Caregiving (NAC)
Patient Organization	National Ataxia Foundation
Patient Organization	National MPS (Mucopolysaccharidoses) Society
Patient Organization	National Niemann-Pick Disease Foundation
Patient Organization	National PKU Alliance
Patient Organization	National Tay-Sachs & Allied Diseases Association (NTSAD)
Patient Organization	Network of Tyrosinemia Advocates
Patient Organization	NW Rare Disease Coalition
Patient Organization	Organic Acidemia Association
Patient Organization	Parent Project Muscular Dystrophy
Patient Organization	Pediatric Hydrocephalus Foundation
Patient Organization	Petronille Healthy Society
Patient Organization	Project Alive
Patient Organization	PTEN Hamartoma Tumor Syndrome Foundation
Patient Organization	Rare And Black
Patient Organization	Rare Disease Innovations Institute, Inc.
Patient Organization	Rare KC
Patient Organization	Rare New England
Patient Organization	Remember the Girls
Patient Organization	Ryan Foundation
Patient Organization	SCID, Angels for Life Foundation
Patient Organization	Sickle Cell Association of Kentuckiana
Patient Organization	SSADH Association
Patient Organization	STXBP1 Foundation
Patient Organization	SynGAP Research Fund, Inc
Patient Organization	T.E.A.M. 4 Travis
Patient Organization	Texas Rare Alliance
Patient Organization	The Akari Foundation
Patient Organization	The Bonnell Foundation: Living with Cystic Fibrosis
Patient Organization	The Calliope Joy Foundation
Patient Organization	The Firefly Fund
Patient Organization	The Julius Louis Happy Little Guy Foundation, Inc
Patient Organization	The Newborn Foundation
Patient Organization	Undiagnosed Diseases Network Foundation (UDNF)
Patient Organization	United MSD Foundation

Amy Klobuchar with Rare Disease Advocates

Take Action

Ask Your Members of Congress to Join the Rare Disease Congressional Caucus

Urge your representatives to join the caucus and stand up for people with rare diseases.

Speak Up

What is a Congressional Caucus?

A congressional caucus is a group of members of the United States Congress that meets to pursue common legislative objectives. Formally, caucuses are formed as congressional member organizations (CMOs) through the United States House of Representatives and governed under the rules of that chamber. There are hundreds of caucuses. The most common caucuses consist of members united as an interest group. A caucus can hold briefings to raise awareness on an issue. However, briefings are not actionable, ie: no bills can be introduced or voted on. A caucus may join Members together in a voting block to support or oppose legislation, however most interest group caucuses are used to gain media attention and raise public awareness. Congressional caucuses must be re-filed in the House at the start of each new Congress. The filing papers must be submitted to the House Committee on Administration.

For more information about sponsoring a Rare Disease Congressional Caucus Briefing contact: fundraising@rareadvocates.org