November 16, 2016

The Honorable Mitch McConnell The Honorable Harry Reid Majority Leader Minority Leader United States Senate United States Senate Washington, DC 20510 Washington, DC 20510

The Honorable Paul Ryan The Honorable Nancy Pelosi Speaker Minority Leader US House of Representatives US House of Representatives Washington, DC 20515 Washington, DC 20515

Dear Leader McConnell, Leader Reid, Speaker Ryan, and Leader Pelosi:

We, the undersigned 217 organizations, represent a widely diverse community of patients and family caregivers with distinct perspectives; yet we stand united in support of the 21st Century Cures Act and urge you to support and move this legislation forward by the end of 2016. This legislation, which passed the House in July 2015 with broad bipartisan support, will help deliver treatments and cures to people who desperately need them.

It is based on thoughtful recommendations of the entire health community, and we thank the Energy and Commerce and Health, Education, Labor, and Pensions Committees for their tireless work to incorporate our feedback into the legislation.

This is a patient-focused bill that will advance the discovery and development of treatments, strengthen the patient voice in the research and regulatory environment, increase funding for the National Institutes of Health and Food and Drug Administration, and greatly improve our innovation ecosystem.

Millions of Americans are desperately waiting for effective treatments and cures for their chronic disease or disability. The organizations that represent these people with chronic conditions urge Congress to pass the 21st Century Cures Act in 2016 in order to speed the development of treatments and cures. Patients simply can't afford to wait -- time is running out.

Sincerely,

National Organizations: Alliance for Aging Research Alliance for Cryoglobulinemia A Kids’ Brain Tumor Cure (PLGA Alport Syndrome Foundation Foundation) Alström Syndrome International Abby Grace Foundation Alzheimer's Association Abigail Alliance for Better Access to American Association for Respiratory Care Developmental Drugs American Autoimmune Related Diseases Adrenal Insufficiency United Association Adult Polyglucosan Body Disease Research American Behcet's Disease Association Foundation American Cancer Society Cancer Action Aidan Jack Seeger Foundation Network AliveAndKickn American Foundation for Suicide Prevention Allergy and Asthma Network American Heart Association American Kidney Fund Cutaneous Lymphoma Foundation Amyloidosis Research Consortium DADA2 Foundation Angioma Alliance Debra of America Arthritis Foundation Dementia Alliance International Association for Creatine Deficiencies Dravet Syndrome Foundation Association for Research in Vision and Drew's Hope Scientific Research Ophthalmology Foundation Asthma and Allergy Foundation of America Dysautonomia International Ataxia Telangiectasia Children's Project Dyskeratosis Congenita Outreach, Inc. Autism Speaks Epilepsy Foundation Autoinflammatory Alliance Erik Metzler Foundation, Inc. Barth Syndrome Foundation EURORDIS- Rare Diseases Europe Bcureful EveryLife Foundation for Rare Diseases Bear Necessities Pediatric Cancer Fabry Support & Information Group Foundation Fanconi Anemia Research Fund Bert's Big Adventure FasterCures Beyond Celiac Fibromuscular Dysplasia Society of Bridge the Gap- SYNGAP Education and America Research Foundation Fibrous Dysplasia Foundation Cardio-Facio-Cutaneous International Fight Colorectal Cancer Caregiver Action Network FMD Chat Caregiver Voices United FORCE: Facing Our Risk of Cancer Central Pain Syndrome Foundation Empowered Charles E. Holman Morgellons Disease Foundation for Prader-Willi Research Foundation Friends of Cancer Research Chase After a Cure Garrett The Grand Chasing Life Project Gene Giraffe Project CheckOrphan Genetic Alliance Children's Cardiomyopathy Foundation Global Colon Cancer Association Children's Craniofacial Association Global Genes Children's PKU Network Global Healthy Living Foundation CLOVES Syndrome Community G-PACT Coalition Duchenne Guardian Hands Foundation Coalition for Clinical Trials Awareness Hannah's Hope Fund for GAN Colon Cancer Alliance Hereditary Neuropathy Foundation Inc. Congenital Adrenal Hyperplasia Research, Hermansky-Pudlak Syndrome Network Inc. Education and Support Foundation Hope4Bridget (CARES Foundation) HSAN1E Society Congenital Hyperinsulinism International Hunter Syndrome Foundation Consortium of Multiple Sclerosis Centers Huntington's Disease Society of America Conquer Myasthenia Gravis Hydrocephalus Association COPD Foundation International Cancer Advocacy Cure CMD Network (ICAN) Cure HHT International Essential Tremor Foundation Cure JM Foundation International FOP Association Cure Sanfilippo Foundation International Foundation for Autoimmune CureCADASIL Arthritis CureDuchenne International Organization of Multiple National Tay-Sachs & Allied Diseases Sclerosis Nurses Association, Inc. (NTSAD) International Pemphigus & Pemphigoid Neurofibromatosis Network Foundation NGLY1.org International WAGR Syndrome Association Noah’s Hope International Waldenstrom's Norton & Elaine Sarnoff Center for Jewish Macroglobulinemia Foundation (IWMF) Genetics JDRF NUBPL Foundation Jonah's Just Begun-Foundation to Cure Organic Acidemia Association Sanfilippo Osteogenesis Imperfecta Foundation Kalel's MPS Superhero Foundation Oxalosis & Hyperoxaluria Foundation Klippel-Feil Syndrome Freedom Parent Project Muscular Dystrophy K-T Support Group PBCers Organization Leiomyosarcoma Direct Research PCa Blue Inc. Foundation (LMSdr) PFO Research Foundation Little Miss Hannah Foundation PKD Foundation LMSarcoma Direct Research Foundation PMG Awareness Organization LuMind Research Down Syndrome Prevent Cancer Foundation Foundation PTEN Hamartoma Tumor Syndrome Lung Transplant Foundation Foundation LUNGevity Pulmonary Fibrosis Advocates Lupus and Allied Diseases Association PXE International Lupus Foundation of America Rally Foundation for Childhood Cancer Lupus Friends and Family Foundation Research Lupus Research Alliance Rare and Undiagnosed Network (RUN) Lymphangiomatosis & Gorham's Disease Rare Disease United Foundation Alliance RASopathies Network M-CM Network Regenerative Medicine Foundation Mended Hearts Research!America Miracle for Madison & Friends RetireSafe MLD Foundation Rush to Live Organization Moebius Syndrome Foundation RYR-1 Foundation Narcolepsy Network Sarcoma Foundation of America National Alliance on Mental Illness Shwachman-Diamond Syndrome National Alopecia Areata Foundation Foundation National Eczema Association Sjögren's Syndrome Foundation National Fragile X Foundation Smashing Walnuts Foundation National Health Council Solve ME/CFS Initiative National Kidney Foundation Spina Bifida Association National Lymphedema Network SSADH Association National MPS Society St. Baldrick's Foundation National Multiple Sclerosis Society Taylor's Tale National Organization for Rare Disorders The AIDS Institute (NORD) The ALS Association National Patient Advocate Foundation The Association for Frontotemporal National Psoriasis Foundation Degeneration (AFTD) The Atypical HUS Foundation

The Choroideremia Research Foundation, Tremor Action Network Inc. Trisomy 18 Foundation, Inc. The Global Foundation for Peroxisomal United Leukodystrophy Foundation Disorders United Spinal Association The Kortney Rose Foundation US Pain Foundation The LAM Foundation Usher 1F Collaborative The Mastocytosis Society Usher 2020 Foundation The Michael J. Fox Foundation Usher Syndrome Coalition The Nicholas Conor Institute Wake Up Narcolepsy Tourette Association of America Wellness Warrior Foundation

State and Local Organizations:

Center for Independence of the Disabled, Lupus Foundation New England NY Lupus Foundation of Northern California Crestwood School District Lupus LA Central Florida Behavioral Health Network Lupus Foundation of Pennsylvania Florida Society of Clinical Oncology North Carolina Rare Disease Coalition (FLASCO) New England Regional Genetics Group, Inc. H.E.A.L.S of the South (Hepatitis (NERGG) Education, Awareness and Liver Support Rare NY Lupus Alliance of Long Island/Queens Rhode Island Ehlers Danlos Syndrome Lupus Alliance of Upstate New York Awareness and Support Lupus Foundation of Florida Sarcoidosis of Long Island

Cc: The Honorable Barack Obama, President, United States The Honorable Lamar Alexander, Chairman, Senate Committee on Health, Education, Labor, & Pensions The Honorable Patty Murray, Ranking Member, Senate Committee on Health, Education, Labor, & Pensions The Honorable Fred Upton, Chairman, House Committee on Energy and Commerce The Honorable Frank Pallone, Ranking Member, House Committee on Energy and Commerce