releases: https://carson.house.gov/newsroom/press-releases/rep-carson-introduces-bipartisan-legislation-to-help-fight-rare-diseases
Data license: MIT · Data source: dwillis/congress-press
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| https://carson.house.gov/newsroom/press-releases/rep-carson-introduces-bipartisan-legislation-to-help-fight-rare-diseases | Rep. Carson Introduces Bipartisan Legislation to Help Fight Rare Diseases | 2019-09-06 | 2019 | 2019-09 | Democrat | House | IN | André Carson | C001072 | carson.house.gov | legacy | Washington, DC Today, Congressman Andr Carson (D-IN) and Rep. Richard Hudson (R-NC) introduced bipartisan legislation that provides better research and resources for the study and treatment of rare diseases. The Rare diseases Advancement, Research, and Education (RARE) Act (H.R 4228) will expand the ability of the National Institutes of Health (NIH) and Centers for Diseases Control and Prevention (CDC) to study rare diseases by improving treatment, research, and diagnostics of rare diseases through new and existing programs. This legislation received the endorsement of 139 patient advocacy groups. I am incredibly honored to introduce this much-needed piece of legislation that will help provide hope and relief to the nearly 1 in 10 Americans living with a rare disease, Congressman Carson said. For these individuals and their loved ones, the conditions they have present unique challenges, including difficulty obtaining an accurate diagnosis and finding doctors with the expertise to treat their condition. Our legislation will help put an end to these ongoing challenges, and ultimately pave the way to many cures. Every year, far too many families experience pain when a loved one comes down with a mysterious and rare disease, Rep. Hudson said. These rare diseases have little data or treatment options available, and specialists are often few and far between. The RARE Act would bolster resources and create new programs to help identify rare diseases and develop new cures. I look forward to working with Rep. Carson to get these needed resources to patients and their families. The RARE Act would improve research by expanding the Rare Diseases Clinical Research Network (RDCRN), an existing program at the NIH that has already proven successful. It would also create a rare disease surveillance system at the CDC, as well as increase health professionals' awareness of these diseases through added engagement from Agency for Healthcare Research and Quality (AHRQ). And it would require the National Academics of Sciences, Engineering and Medicine to update their 2010 report on rare diseases Rare Diseases and Orphan Products: Accelerating Research and Development in order to further evaluate rare disease efforts and make further recommendations to policymakers. More information on the bill can be found here. Full List of Original Cosponsors: Rep. Julia Brownley Rep. Larry Bucshon Rep. Peter DeFazio Rep. Ted Deutch Rep. Brian Fitzpatrick Rep. Sheila Jackson Lee Rep. Ben Ray Lujn Rep. Carolyn Maloney Rep. Gwen Moore Rep. Stephanie Murphy Rep. Eleanor Holmes Norton Rep. Jamie Raskin Rep. Harley Rouda Rep. Thomas Suozzi Rep. Jackie Walorski Full List of Endorsements: A Twist of Fate-ATS ADNP Kids Research Foundation Adrenal Insufficiency United All Things Kabuki Adult Polyglucosan Body Disease Research Foundation (APBDRF) Alagille Syndrome Alliance Alport Syndrome Foundation ALS Association American Behcet's Disease Association American Multiple Endocrine Neoplasia Support American Partnership for Eosinophilic Disorders (APFED) Amyloidosis Foundation Amyloidosis Research Consortium Aplastic Anemia and MDS International Foundation APS Type 1 Foundation, Inc. Association for Creatine Deficiencies Association for Frontotemporal Degeneration Association of Gastrointestinal Motility Disorders, Inc. (AGMD) Autoimmune Hepatitis Association Autoinflammatory Alliance Batten Disease Support and Research Association Bridge the Gap - SYNGAP Education and Research Foundation Castleman's Awareness & Research Effort/Castleman Disease Collaborative Network CdLS Foundation Central Pain Nerve Center Charcot-Marie-Tooth Association Children's Cardiomyopathy Foundation Children's PKU Network Children's Tumor Foundation Chloe Barnes Rare Disease Foundation Cholangiocarcinoma Foundation CLOVES Syndrome Community CMTC-OVM Cure SMA Congenital Hyperinsulinism International CureCMT4J/Talia Duff Foundation CurePSP Cutaneous Lymphoma Foundation Dravet Syndrome Foundation Dysautonomia Foundation Dystonia Advocacy Network Family Caregiver Alliance Fibrous Dysplasia Foundation Foundation Fighting Blindness Foundation for Prader-Willi Research Friedreich's Ataxia Research Alliance (FARA) Galactosemia Foundation GBS|CIDP Foundation International Genetic Alliance Global Genes - Allies in Rare Disease Glut1 Deficiency Foundation Gut Check Foundation Guthy-Jackson Charitable Foundation HCU Network America Hermansky-Pudlak Syndrome Network Histiocytosis Association HSAN1E Society Hydrocephalus Association Immune Deficiency Foundation Indian Organization for Rare Diseases International Fibrodysplasia Ossificans Progressiva (FOP) Association International Pemphigus and Pemphigoid Foundation International WAGR Syndrome Association International Waldenstrom's Macroglobulinemia Foundation (IWMF) KIF1A.ORG LAL Solace LAM Foundation Life Raft Group Li-Fraumeni Syndrome Association (LFS Association / LFSA) Lung Transplant Foundation Lymphangiomatosis & Gorham's Disease Alliance Maple Syrup Urine Disease Family Support Group M-CM Network MDS Foundation MitoAction MLD Foundation Moebius Syndrome Foundation Multiple System Atrophy Coalition Myasthenia Gravis Foundation of America Myositis Association Myotonic Dystrophy Foundation National Adrenal Diseases Foundation National Foundation for Ectodermal Dysplasias National MPS Society National Organization for Albinism and Hypopigmentation National PKU Alliance National PKU News National Spasmodic Dysphonia Association National Urea Cycle Disorders Foundation NBIA Disorders Association NephCure Kidney International Neurofibromatosis Network Neurofibromatosis Northeast NGLY1.org NTM Info & Research Oley Foundation Organic Acidemia Association Osteogenesis Imperfecta Foundation Peter Morley, Patient Advocate Phelan-McDermid Syndrome Foundation PKD Foundation Platelet Disorder Support Association Prader-Willi Syndrome Association (USA) PRP Alliance, Pulmonary Fibrosis Foundation Pulmonary Hypertension Association, PXE International Rare and Undiagnosed Network (RUN) Rare Disease United Foundation RASopathies Network, RYR-1 Foundation SADS Foundation, Scleroderma Foundation Shwachman-Diamond Syndrome Foundation Sofia Sees Hope, Soft Bones, Inc. SPAN Parent Advocacy Network Spastic Paraplegia Foundation Spinal CSF Leak Foundation SSADH Association Sturge-Weber Foundation TargetCancer Foundation Tarlov Cyst Disease Foundation Team Audrey HLH The Desmoid Tumor Research Foundation The FPIES Foundation The Global Foundation for Peroxisomal Disorders The Guthy-Jackson Charitable Foundation The Hyper IgM Foundation The Jansen's Foundation The LAM Foundation The Morgan Leary Vaughan Fund, Inc. The Myelin Project The Myocarditis Foundation The Snyder-Robinson Foundation The Transverse Myelitis Association The XLH Network, Inc. Timothy Syndrome Alliance Tuberous Sclerosis Alliance United Leukodystrophy Foundation US Hereditary Angioedema Association Vasculitis Foundation, VHL Alliance Wilhelm Foundation - the Undiagnosed Williams Syndrome Association | 1 | 2026-03-30T12:14:52Z | 2026-03-30T12:14:52Z |