WASHINGTON, DC - Today, 251 patient organizations joined together in expressing their strong support for H.R. 6, the 21st Century Cures Act. In a letter sent to full committee Chairman Fred Upton (R-MI), Rep. Diana DeGette (D-CO), Health Subcommittee Chairman Joe Pitts (R-PA), full committee Ranking Member Frank Pallone, Jr. (D-NJ), and Health Subcommittee Ranking Member Gene Green (D-TX), the groups write:
“We, the undersigned 251 organizations, represent a widely diverse community of patients and family caregivers with distinct perspectives; yet we stand united in support of H.R. 6, the 21st Century Cures Act.
“This bill is based on the hard work and thoughtful recommendations of the entire health community, and we thank you for your 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 regulatory environment, increase funding for the National Institutes of Health and Food and Drug Administration, and greatly improve our innovation ecosystem.
“Just as Democrats and Republicans have come together to craft a bipartisan bill that cleared the Energy and Commerce Committee with a unanimous vote, so, too, do we affirm our support of this game-changing legislation."
Read the complete letter and a full list of organizations online here.
National Organizations:
A Kids’ Brain Tumor Cure (aka The Pediatric Low Grade Astrocytoma Foundation)
Abigail Alliance for Better Access to Developmental Drugs
Addario Lung Cancer Foundation
Adrenal Insufficiency United
AIDS Alliance for Women, Infants, Children, Youth & Families
The AIDS Institute
Ali’s Angels Foundation
Allergy & Asthma Network
Alliance for Aging Research
Alliance for Lupus Research
Alliance for Patient Access
Alliance for the Adoption of Innovations in Medicine (Aimed Alliance)
Alpha-1 Foundation
The ALS Association
Alstrom Syndrome International
Alzheimer’s Association
Alzheimer’s Drug Discovery Foundation
American Aging Association
American Association for Geriatric Psychiatry
American Association for Long Term Care Nursing
American Association for Respiratory Care
American Association of Diabetes Educators
American Association of Kidney Patients
American Autoimmune Related Diseases Association
American Behcet’s Disease Association
American Brain Tumor Association
American Epilepsy Society
American Federation for Aging Research
American Foundation for Suicide Prevention
American Foundation for the Blind
American Kidney Fund
American Neurological Association
American Nurses Association
American Partnership for Eosinophilic Disorders
American Society of Nephrology
Amputee Coalition
Ara Parseghian Medical Research Foundation
Arthritis Foundation
Assisted Living Federation of America
The Association for Frontotemporal Degeneration
Association for Glycogen Storage Disease
Association for Research in Vision and Ophthalmology
Association of University Centers on Disabilities
Asthma and Allergy Foundation of America
Autism Speaks
Batten Disease Support and Research Association
Bcureful
BRBN Alliance
Bridge the Gap- SYNGAP Education and Research Foundation
CancerCare
Cardio-Facio-Cutaneous International
Caregiver Action Network
Celiac Disease Foundation
Childhood Brain Tumor Foundation
The Children’s Medical Research Foundation, Inc.
Children’s PKU Network
Choroideremia Research Foundation, Inc.
Chris4Life Colon Cancer Foundation
Coalition for Clinical Trials Awareness
Coalition for Pulmonary Fibrosis
Colon Cancer Alliance
Congenital Adrenal Hyperplasia Research, Education & Support Foundation (CARES Foundation, Inc.)
Continuing Medical Education Coalition
COPD Foundation
Cure Alzheimer’s Fund
Cure Cancer, P.C.
Cure HHT
CureDuchenne
Dementia Alliance International
Depression and Bipolar Support Alliance
Dysautonomia International
Easter Seals
The Eden Alternative
Emphysema Foundation for Our Right To Survive
Epilepsy Foundation
Erdheim-Chester Disease Global Alliance
EveryLife Foundation for Rare Diseases
FasterCures - A Center of the Milken Institute
Fibro Gal Agency LLC
Fight Colorectal Cancer
The Foundation for Ichthyosis & Related Skin Types, Inc.
Foundation for Sarcoidosis Research
Friedreich’s Ataxia Research Alliance
Friends of Cancer Research
Garrett the Grand - Batten Fighter
GBS-CIDP Foundation International
Gene Giraffe Project
Genetic Alliance
The Gerontological Society of America
GIST Cancer Awareness Foundation
Global Colon Cancer Association
Global Genes
Global Liver Institute
GNE Myopathy International
Guardian Hands Foundation
Hannah’s Hope Fund
HealthHIV
Hepatitis Foundation International
Hispanic CREO
Huntington’s Disease Society of America
Hydrocephalus Association
Immune Deficiency Foundation
Intacranial Hypertension Research Foundation
International Cancer Advocacy Network
International Essential Tremor Foundation
International Foundation for Autoimmune Arthritis
International Myeloma Foundation
International Pemphigus & Pemphigoid Foundation
International Waldenstrom’s Macroglobulinemia Foundation
JDRF
Jonah’s Just Begun - Foundation to Cure Sanfilippo
Judson’s Legacy
Klippel-Feil Syndrome Freedom
The Kortney Rose Foundation
The LAM Foundation
LatinosAgainstAlzheimer’s
The Leukemia & Lymphoma Society
Little Miss Hannah Foundation
LuMind Research Down Syndrome Foundation
Lung Cancer Alliance
Lung Transplant Foundation
LUNGevity Foundation
Lupus and Allied Diseases Association, Inc.
Lupus Foundation of America
Lupus Research Institute
LymeDisease.org
Lymphangiomatosis & Gorham’s Disease Alliance
The Mastocytosis Society
M-CM Network
MdDS Balance Disorder Foundation
Men Against Breast Cancer
Men’s Health Network
Mental Health America
The Michael J. Fox Foundation for Parkinson’s Research
Miracle for Madison & Friends
MLD Foundation
Moebius Syndrome Foundation
The Mucolipidosis Type IV (ML4) Foundation
Muscular Dystrophy Association
Myasthenia Gravis Foundation of America
The Myositis Association
National Alliance for Caregiving
National Alliance for Eye and Vision Research
National Alliance on Mental Illness
National Alopecia Areata Foundation
National Association for Uniformed Services
National Association of Hispanic Nurses
National Coalition for LGBT Health
National Council for Behavioral Health
National Down Syndrome Society
National Eczema Association
National Foundation for Celiac Awareness
National Foundation for Ectodermal Dysplasias
National Fragile X Foundation
National Health Council
National Hispanic Medical Association
National Kidney Foundation
National MPS Society
National Multiple Sclerosis Society
The National Organisation for People Living with Hepatitis B
National Organization of Vascular Anomalies
National Osteoporosis Foundation
National Pancreas Foundation
National Patient Advocate Foundation
National Prostate Cancer Awareness Foundation
National Psoriasis Foundation
National Task Group on Intellectual Disabilities and Dementia Practices
National Tay-Sachs & Allied Diseases Association
NBIA Disorders Association
Noah’s Hope
NTM Info & Research
Oncology Nursing Society
Oncology Resource Networks, LLC
Osteogenesis Imperfecta Foundation
OWL - The Voice of Women 40+
Parent Project Muscular Dystrophy
Parkinson’s Action Network
Parkinson’s Disease Foundation
Patient Services, Inc.
PCD Foundation
Pediatric Hydrocephalus Foundation
PKD Foundation
Platelet Disorder Support Association
Powerful Patient Inc.
Prader-Willi Syndrome Association (USA)
Preeclampsia Foundation
Prevent Cancer Foundation
Pulmonary Fibrosis Advocates
PXE International
Rally Foundation for Childhood Cancer Research
Rare and Undiagnosed Network
Rare Cancer Research Foundation
Rare Disease United Foundation
RARE Science, Inc.
RASopathies Network USA
Relapsing Polychondritis Awareness and Support Foundation, Inc.
Research!America
ResearchersAgainstAlzheimers
RetireSafe
Rush To Live
S.L.E. Lupus Foundation
SaludUSA
Sanfilippo Foundation for Children
Sarcoma Foundation of America
Save Your Liver Foundation
Self-Management Alliance
The Simon Foundation for Continence
Sjögren’s Syndrome Foundation
Solidarity Project Advocacy Network
Sophia’s Fund
Spina Bifida Association
Taylor’s Tale
Tourette Association of America
Transplant Buddies
Tremor Action Network
The United Leukodystrophy Foundation
US Pain Foundation
Us TOO International, Prostate Cancer Education and Support Network
USAgainstAlzheimer’s
USAgainstAlzheimer’s Activists Network
USAgainstAlzheimer’s Clergy Network
Veterans Health Council
Vietnam Veterans of America
Vitiligo Support International
Volunteers of America
WomenAgainstAlzheimer’s
State and Local Organizations:
Alzheimer’s and Dementia Alliance of Wisconsin
Alzheimer’s Tennessee
Banner Alzheimer’s Institute
Benjamin Rose Institute on Aging
Boley Centers
Center for BrainHealth at The University of Texas at Dallas
Central Florida Behavioral Health Network
Elder Care Advocacy of Florida
Florida Society of Clinical Oncology
H.E.A.L.S of the South
Institute of Human Virology at the University of Maryland School of Medicine
Louisiana Women’s Network
Lupus Alliance of Long Island/Queens
Lupus Foundation of Florida, Inc.
Lupus Foundation of Northern California
Lupus Foundation of Pennsylvania
Lupus Foundation of Southern California
Lupus LA
Lupus Society of Illinois
Myasthenia Gravis Foundation of Illinois
New England Regional Genetics Group
New Orleans Council on Aging
Pennsylvania Prostate Cancer Coalition
USF Health Byrd Alzheimer’s Institute
Yerkes National Primate Research Center
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