{"database": "press", "table": "releases", "rows": [["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", "Andr\u00e9 Carson", "C001072", "carson.house.gov", null, null, "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.\nI 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.\nEvery 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.\nThe 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).\nAnd 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.\n\nFull List of Original Cosponsors:\n \nRep. Julia Brownley\n\tRep. Larry Bucshon\n\tRep. Peter DeFazio\n\tRep. Ted Deutch\n\tRep. Brian Fitzpatrick\n\tRep. Sheila Jackson Lee\n\tRep. Ben Ray Lujn\n\tRep. Carolyn Maloney\n\tRep. Gwen Moore\n\tRep. Stephanie Murphy\n\tRep. Eleanor Holmes Norton\n\tRep. Jamie Raskin\n\tRep. Harley Rouda\n\tRep. Thomas Suozzi\n\tRep. Jackie Walorski\n \n\nFull List of Endorsements:\n \nA Twist of Fate-ATS\n\tADNP Kids Research Foundation\n\tAdrenal Insufficiency United\n\tAll Things Kabuki\n\tAdult Polyglucosan Body Disease Research Foundation (APBDRF)\n\tAlagille Syndrome Alliance\n\tAlport Syndrome Foundation\n\tALS Association\n\tAmerican Behcet's Disease Association\n\tAmerican Multiple Endocrine Neoplasia Support\n\tAmerican Partnership for Eosinophilic Disorders (APFED)\n\tAmyloidosis Foundation\n\tAmyloidosis Research Consortium\n\tAplastic Anemia and MDS International Foundation\n\tAPS Type 1 Foundation, Inc.\n\tAssociation for Creatine Deficiencies\n\tAssociation for Frontotemporal Degeneration\n\tAssociation of Gastrointestinal Motility Disorders, Inc. (AGMD)\n\tAutoimmune Hepatitis Association\n\tAutoinflammatory Alliance\n\tBatten Disease Support and Research Association\n\tBridge the Gap - SYNGAP Education and Research Foundation\n\tCastleman's Awareness & Research Effort/Castleman Disease Collaborative Network\n\tCdLS Foundation\n\tCentral Pain Nerve Center\n\tCharcot-Marie-Tooth Association\n\tChildren's Cardiomyopathy Foundation\n\tChildren's PKU Network\n\tChildren's Tumor Foundation\n\tChloe Barnes Rare Disease Foundation\n\tCholangiocarcinoma Foundation\n\tCLOVES Syndrome Community\n\tCMTC-OVM\n\tCure SMA\n\tCongenital Hyperinsulinism International\n\tCureCMT4J/Talia Duff Foundation\n\tCurePSP\n\tCutaneous Lymphoma Foundation\n\tDravet Syndrome Foundation\n\tDysautonomia Foundation\n\tDystonia Advocacy Network\n\tFamily Caregiver Alliance\n\tFibrous Dysplasia Foundation\n\tFoundation Fighting Blindness\n\tFoundation for Prader-Willi Research\n\tFriedreich's Ataxia Research Alliance (FARA)\n\tGalactosemia Foundation\n\tGBS|CIDP Foundation International\n\tGenetic Alliance\n\tGlobal Genes - Allies in Rare Disease\n\tGlut1 Deficiency Foundation\n\tGut Check Foundation\n\tGuthy-Jackson Charitable Foundation\n\tHCU Network America\n\tHermansky-Pudlak Syndrome Network\n\tHistiocytosis Association\n\tHSAN1E Society\n\tHydrocephalus Association\n\tImmune Deficiency Foundation\n\tIndian Organization for Rare Diseases\n\tInternational Fibrodysplasia Ossificans Progressiva (FOP) Association\n\tInternational Pemphigus and Pemphigoid Foundation\n\tInternational WAGR Syndrome Association\n\tInternational Waldenstrom's Macroglobulinemia Foundation (IWMF)\n\tKIF1A.ORG\n\tLAL Solace\n\tLAM Foundation\n\tLife Raft Group\n\tLi-Fraumeni Syndrome Association (LFS Association / LFSA)\n\tLung Transplant Foundation\n\tLymphangiomatosis & Gorham's Disease Alliance\n\tMaple Syrup Urine Disease Family Support Group\n\tM-CM Network\n\tMDS Foundation\n\tMitoAction\n\tMLD Foundation\n\tMoebius Syndrome Foundation\n\tMultiple System Atrophy Coalition\n\tMyasthenia Gravis Foundation of America\n\tMyositis Association\n\tMyotonic Dystrophy Foundation\n\tNational Adrenal Diseases Foundation\n\tNational Foundation for Ectodermal Dysplasias\n\tNational MPS Society\n\tNational Organization for Albinism and Hypopigmentation\n\tNational PKU Alliance\n\tNational PKU News\n\tNational Spasmodic Dysphonia Association\n\tNational Urea Cycle Disorders Foundation\n\tNBIA Disorders Association\n\tNephCure Kidney International\n\tNeurofibromatosis Network\n\tNeurofibromatosis Northeast\n\tNGLY1.org\n\tNTM Info & Research\n\tOley Foundation\n\tOrganic Acidemia Association\n\tOsteogenesis Imperfecta Foundation\n\tPeter Morley, Patient Advocate\n\tPhelan-McDermid Syndrome Foundation\n\tPKD Foundation\n\tPlatelet Disorder Support Association\n\tPrader-Willi Syndrome Association (USA)\n\tPRP Alliance, Pulmonary Fibrosis Foundation\n\tPulmonary Hypertension Association, PXE International\n\tRare and Undiagnosed Network (RUN)\n\tRare Disease United Foundation\n\tRASopathies Network, RYR-1 Foundation\n\tSADS Foundation, Scleroderma Foundation\n\tShwachman-Diamond Syndrome Foundation\n\tSofia Sees Hope, Soft Bones, Inc.\n\tSPAN Parent Advocacy Network\n\tSpastic Paraplegia Foundation\n\tSpinal CSF Leak Foundation\n\tSSADH Association\n\tSturge-Weber Foundation\n\tTargetCancer Foundation\n\tTarlov Cyst Disease Foundation\n\tTeam Audrey HLH\n\tThe Desmoid Tumor Research Foundation\n\tThe FPIES Foundation\n\tThe Global Foundation for Peroxisomal Disorders\n\tThe Guthy-Jackson Charitable Foundation\n\tThe Hyper IgM Foundation\n\tThe Jansen's Foundation\n\tThe LAM Foundation\n\tThe Morgan Leary Vaughan Fund, Inc.\n\tThe Myelin Project\n\tThe Myocarditis Foundation\n\tThe Snyder-Robinson Foundation\n\tThe Transverse Myelitis Association\n\tThe XLH Network, Inc.\n\tTimothy Syndrome Alliance\n\tTuberous Sclerosis Alliance\n\tUnited Leukodystrophy Foundation\n\tUS Hereditary Angioedema Association\n\tVasculitis Foundation, VHL Alliance\n\tWilhelm Foundation - the Undiagnosed\n\tWilliams Syndrome Association", 1, "2026-03-30T12:14:52Z", "2026-03-30T12:14:52Z"]], "columns": ["url", "title", "date", "year", "month", "party", "chamber", "state", "member_name", "bioguide_id", "domain", "scraper", "source", "date_source", "text", "has_text", "collected_at", "updated_at"], "primary_keys": ["url"], "primary_key_values": ["https://carson.house.gov/newsroom/press-releases/rep-carson-introduces-bipartisan-legislation-to-help-fight-rare-diseases"], "units": {}, "query_ms": 0.8480329997837543, "source": "dwillis/congress-press", "source_url": "https://github.com/dwillis/congress-press", "license": "MIT", "license_url": "https://github.com/dwillis/congress-press/blob/main/LICENSE"}