Press Release

251 Patient Organizations Band Together for “Game-Changing” #Cures2015


“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.”

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


BRBN Alliance

Bridge the Gap– SYNGAP Education and Research Foundation


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


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


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


Jonah’s Just Begun – Foundation to Cure Sanfilippo

Judson’s Legacy

Klippel-Feil Syndrome Freedom

The Kortney Rose Foundation

The LAM Foundation


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

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.




Rush To Live

S.L.E. Lupus Foundation


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 Activists Network

USAgainstAlzheimer’s Clergy Network

Veterans Health Council

Vietnam Veterans of America

Vitiligo Support International

Volunteers of America


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

Follow 21st Century Cures online HERE.


Press Release