21st Century Cures Act Sign-On Letter

The National Health Council (NHC) is urging the patient community to show its support for moving the 21st Century Cures legislation forward by the end of 2016 by signing the letter below. We ask that you lend your signature no later than noon Wednesday, November 16. Please share the URL of this page with other patient and family caregiver organizations and urge them to support this effort. If you have any questions about the letter, please contact Eric Gascho, NHC Vice President of Government Affairs, at egascho@nhcouncil.org.

Note that only your organization name will appear on the letter and you must be authorized on behalf of your organization to commit to signing publicly.


November XX, 2016

The Honorable Mitch McConnell
317 Russell Senate Office Building
Washington, DC 20510

The Honorable Harry Reid
522 Hart Senate Office Building
Washington, DC 20510

The Honorable Paul Ryan
1233 Longworth House Office Building
Washington, DC 20515

The Honorable Nancy Pelosi
235 Cannon House Office Building
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:

A Kids' Brain Tumor Cure (PLGA Foundation)
Abby Grace Foundation
Abigail Alliance for Better Access to Developmental Drugs
Adrenal Insufficiency United
Adult Polyglucosan Body Disease Research Foundation
Aidan Jack Seeger Foundation
AliveAndKickn
Allergy and Asthma Network
Alliance for Aging Research
Alliance for Cryoglobulinemia
Alport Syndrome Foundation
Alstrom Syndrome International
Alzheimer's Association
American Association for Respiratory Care
American Autoimmune Related Diseases Association
American Behcet's Disease Association
American Cancer Society Cancer Action Network
American Foundation for Suicide Prevention
American Heart Association
American Kidney Fund
Amyloidosis Research Consortium
Angioma Alliance
Arthritis Foundation
Association for Creatine Deficiencies
Association for Research in Vision and Ophthalmology
Asthma and Allergy Foundation of America
Ataxia Telangiectasia Children's Project
Autism Speaks
Autoinflammatory Alliance
Barth Syndrome Foundation
Bcureful
Bear Necessities Pediatric Cancer Foundation
Bert's Big Adventure
Beyond Celiac
Bridge The Gap- SYNGAP Education and Research Foundation
Cardio-Facio-Cutaneous International
Caregiver Action Network
Caregiver Voices United
Central Pain Syndrome Foundation
Charles E. Holman Morgellons Disease Foundation
Chase After a Cure
Chasing Life Project
CheckOrphan
Children's Cardiomyopathy Foundation
Children's Craniofacial Association
Children's PKU Network
CLOVES Syndrome Community
Coalition Duchenne
Coalition for Clinical Trials Awareness
Colon Cancer Alliance
Congenital Adrenal Hyperplasia Research, Education and Support Foundation (CARES Foundation)
Congenital Hyperinsulinism International
Consortium of Multiple Sclerosis Centers 
Conquer Myasthenia Gravis
COPD Foundation
Cure CMD
Cure HHT
Cure JM Foundation
Cure Sanfilippo Foundation
CureCADASIL
CureDuchenne
Cutaneous Lymphoma Foundation
DADA2 Foundation
Debra of America
Dementia Alliance International
Dravet Syndrome Foundation
Drew's Hope Scientific Research Foundation
Dysautonomia International
Dyskeratosis Congenita Outreach, Inc
Epilepsy Foundation
Erik Metzler Foundation, Inc.
EURORDIS - Rare Diseases Europe
EveryLife Foundation for Rare Diseases
Fabry Support & Information Group
Fanconi Anemia Research Fund
FasterCures
Fibromuscular Dysplasia Society of America
Fibrous Dysplasia Foundation
Fight Colorectal Cancer
FMD Chat
FORCE: Facing Our Risk of Cancer Empowered
Foundation for Prader-Willi Research
Friends of Cancer Research
Garrett The Grand
Gene Giraffe Project
Genetic Alliance
Global Colon Cancer Association
Global Genes 
Global Healthy Living Foundation

G-PACT
Guardian Hands Foundation
Hannah's Hope Fund for GAN
Hereditary Neuropathy Foundation Inc.
Hermansky-Pudlak Syndrome Network Inc. 
Hope4Bridget
HSAN1E Society
Hunter Syndrome Foundation
Huntington's Disease Society of America
Hydrocephalus Association
Immune Deficiency Foundation
International Cancer Advocacy Network (ICAN)
International Essential Tremor Foundation
International FOP Association
International Foundation for Autoimmune Arthritis
International Organization of Multiple Sclerosis Nurses
International Pemphigus & Pemphigoid Foundation
International WAGR Syndrome Association
International Waldenstrom's Macroglobulinemia Foundation (IWMF)
JDRF
Jonah's Just Begun-Foundation to Cure Sanfilippo
Kalel's MPS Superhero Foundation
Klippel-Feil Syndrome Freedom
K-T Support Group
Leiomyosarcoma Direct Research Foundation
Little Miss Hannah Foundation
LMSarcoma Direct Research Foundation
LuMind Research Down Syndrome Foundation
Lung Transplant Foundation
LUNGevity
Lupus and Allied Diseases Association

Lupus Foundation of America
Lupus Friends and Family Foundation
Lupus Research Alliance
Lymphangiomatosis & Gorham's Disease Alliance
M-CM Network
Mended Hearts
Miracle for Madison & Friends
MLD Foundation
Moebius Syndrome Foundation
Narcolepsy Network
National Alliance on Mental Illness
National Alopecia Areata Foundation
National Eczema Association
National Fragile X Foundation
National Health Council
National Kidney Foundation
National Lymphedema Network
National MPS Society
National Multiple Sclerosis Society
National Organization for Rare Disorders (NORD)
National Patient Advocate Foundation
National Psoriasis Foundation
National Tay-Sachs & Allied Diseases Association, Inc.
Neurofibromatosis Network
NGLY1.org
Noah's Hope
Norton & Elaine Sarnoff Center for Jewish Genetics
NUBPL Foundation
Organic Acidemia Association
Osteogenesis Imperfecta Foundation
Parent Project Muscular Dystrophy
PBCers Organization
PCa Blue Inc.
PFO Research Foundation
PKD Foundation
PMG Awareness Organization
Prevent Cancer Foundation
PTEN Hamartoma Tumor Syndrome Foundation
Pulmonary Fibrosis Advocates
PXE International
Rally Foundation for Childhood Cancer Research
Rare and Undiagnosed Network (RUN)
Rare Disease United Foundation
RASopathies Network
Regenerative Medicine Foundation
Research!America
RetireSafe
Rush to Live Organization
RYR-1 Foundation
Sarcoma Foundation of America
Shwachman-Diamond Syndrome Foundation
Sjogren's Syndrome Foundation

Smashing Walnuts Foundation
Solve ME/CFS Initiative

Spina Bifida Association
SSADH Association
St. Baldrick's Foundation
Taylor's Tale
The AIDS Institute
The ALS Association
The Association for Frontotemporal Degeneration (AFTD)
The Atypical HUS Foundation
The Choroideremia Research Foundation, Inc.
The Global Foundation for Peroxisomal Disorders
The Kortney Rose Foundation
The LAM Foundation
The Mastocytosis Society
The Michael J. Fox Foundation
The Nicholas Conor Institute
The Oxalosis & Hyperoxaluria Foundation
Tourette Association of America

Tremor Action Network
Trisomy 18 Foundation, Inc.
United Leukodystrophy Foundation
United Spinal Association

US Pain Foundation
Usher 1F Collaborative
Usher 2020 Foundation
Usher Syndrome Coalition
Wake Up Narcolepsy
Wellness Warrior Foundation

State and Local Organizations:

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

 

CC: President Obama, Senator Alexander, Senator Murray, Representative Upton, Representative Pallone

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