Press Releases

Rep. Raskin Sponsors Bipartisan Legislation to Help Fight Rare Diseases

September 6, 2019

(WASHINGTON, D.C.) – Today, Congressman Jamie Raskin (D-MD) joined Reps. André Carson (D-IN) and Richard Hudson (R-NC) in introducing 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).

The legislation would also 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.

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 Luján
  • 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

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

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Permalink: https://raskin.house.gov/2019/9/rep-raskin-sponsors-bipartisan-legislation-help-fight-rare-diseases