Anthony Nolan We are experts in cellular starting material; offering cell collection, genetic testing, sequencing ... Patient Advocacy Organization   |
Blood Cancer United Blood Cancer United® (formerly The Leukemia & Lymphoma Society) is the largest global nonprofit focu... Patient Advocacy Organization |
Breakthrough T1D Founded in 1970 by families whose loved ones had been diagnosed with type 1 diabetes (T1D), Breakthr... Patient Advocacy Organization |
Cancer Support Community Cancer Support Community is a global nonprofit network with over 200 locations in 50 markets, includ... Patient Advocacy Organization |
Caring Cross At Caring Cross, we believe that every person should be able to access advanced medicines at an affo... Patient Advocacy Organization |
Coalition for Hemophilia B We are a national nonprofit serving the Hemophilia community for 35 years. Our mission is to improve... Patient Advocacy Organization |
Comitato Famiglie Talassemici (Committee of Thalassemic Families) In 1994, the relatives of patients suffering from Thalassemia thought of joining a committee to try ... Patient Advocacy Organization |
Community Oncology Alliance The Community Oncology Alliance is a national nonprofit organization that advocates for independent ... Patient Advocacy Organization |
Cory Heidaran Charitable Foundation Statement of problem: Every 40 seconds, in the US, someone dies by suicide (World Health Organizatio... Patient Advocacy Organization |
CURE SYNGAP1 CURE SYNGAP1 (FKA SynGAP Research Fund) is a 501(c)(3) public charity incorporated in 2018. The miss... Patient Advocacy Organization |
CureDuchenne Ventures Our mission is to save this generation of children and young adults with Duchenne muscular dystrophy... Patient Advocacy Organization |
CureLGMD2i Foundation The CureLGMD2i Foundation is a 501(c)3 non-profit organization, founded in 2011 by the Brazzo family... Patient Advocacy Organization |
Danon Disease Foundation The Danon Foundation empowers people living with Danon disease, providing trusted information, suppo... Patient Advocacy Organization |
debra of America debra of America's mission is to improve the lives of those impacted by Epidermolysis Bullosa (EB) —... Patient Advocacy Organization |
Dravet Syndrome Foundation DSF is a nonprofit organization that acts as a convener of the Dravet syndrome community. Since our... Patient Advocacy Organization |
EB Research Partnership Founded by Jill and Ed Vedder (Pearl Jam) along with a dedicated group of parents, EB Research Partn... Patient Advocacy Organization |
Emily Whitehead Foundation The Emily Whitehead Foundation is a 501(c)(3) nonprofit organization that raises awareness and fundi... Patient Advocacy Organization |
ESGCT - European Society of Cell & Gene Therapy The European Society of Gene and Cell Therapy (ESGCT) promotes basic and clinical research in gene t... Patient Advocacy Organization |
EveryLife Foundation for Rare Diseases Founded in 2009, the EveryLife Foundation for Rare Diseases is dedicated to accelerating biotech inn... Patient Advocacy Organization |
Fanconi Cancer Foundation The Fanconi Cancer Foundation is a nonprofit organization dedicated to improving the lives of people... Patient Advocacy Organization |
FARA - Friedreich's Ataxia Research Alliance Friedreich’s Ataxia (FA) is the most common inherited ataxia affecting one in 50,000 people causing ... Patient Advocacy Organization |
Fight Colorectal Cancer Fight Colorectal Cancer is all about advocacy and research. We’re the leaders when it comes to advoc... Patient Advocacy Organization |
Foundation for Angelman Syndrome Therapeutics FAST is the leading patient advocacy organization working to cure Angelman syndrome. As the largest ... Patient Advocacy Organization |
Friends Of Cancer Research Friends of Cancer Research (Friends) powers advances in science and policy that speed life-saving tr... Patient Advocacy Organization |
Gaucher Community Alliance Our mission is to help those affected with all types of Gaucher disease live their fullest life poss... Patient Advocacy Organization |
Gift of Life Marrow Registry The Gift of Life Marrow Registry saves lives through marrow and stem cell transplants.... Patient Advocacy Organization |
Global Genes About Us
Global Genes™ is one of the leading rare disease patient advocacy organizations in the wor... Patient Advocacy Organization |
Good Days Good Days is a national non-profit advocacy organization that utilizes proprietary, state-of the art... Patient Advocacy Organization |
Hemophilia Federation of America The Beginning
In the 1980s, approximately 90% of patients with severe hemophilia were infected with... Patient Advocacy Organization |
INADcure Foundation Founded in 2017, the INADcure Foundation is a 501c3 nonprofit charity whose mission is to support th... Patient Advocacy Organization |
International Society for Cellular Therapy (ISCT) Established in 1992, ISCT, the International Society for Cell & Gene Therapy is a growing global org... Patient Advocacy Organization |
LandOnACure Foundation LandOnACure was founded to support families living with rare genetic disorders. Rare disease is one ... Patient Advocacy Organization |
Lymphoma Research Foundation The Lymphoma Research Foundation’s mission is to realize the promise of science to eradicate lymphom... Patient Advocacy Organization |
Malcom Orlando Ivy Foundation Our vision is a future where Multiple Myeloma is eradicated: early detection is the norm, and every ... Patient Advocacy Organization |
MEPAN Foundation Danny and Nikki Miller established the MEPAN Foundation after their sons Carson and Chase were diagn... Patient Advocacy Organization |
Michael J. Fox Foundation for Parkinson's Research Our Promise
The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson’s disease th... Patient Advocacy Organization |
Missouri Cures Missouri Cures Education Foundation
The Missouri Cures Education Foundation was established as a 50... Patient Advocacy Organization |
MLD Foundation We C.A.R.E.™ … Compassion for families, increasing Awareness, influencing & funding Research, and pr... Patient Advocacy Organization |
Monoamine Oxidase Deficiency Foundation Monoamine Oxidase Deficiency Foundattion was established in 2022 to increase awareness of and fund r... Patient Advocacy Organization |
National Bleeding Disorders Foundation The National Bleeding Disorders Foundation (formerly the National Hemophilia Foundation) is dedicate... Patient Advocacy Organization |
National MPS Society Care
Supporting Families Every Step of the Way
We provide essential resources, financial assistance,... Patient Advocacy Organization |
National Multiple Sclerosis Society Multiple sclerosis, an unpredictable, often disabling disease of the central nervous system, interru... Patient Advocacy Organization |
Nebraska Coalition for Lifesaving Cures Who We Are
In 2000, a group of individuals formed a not-for prof... Patient Advocacy Organization |
NMDP - National Marrow Donor Program NMDP is a global nonprofit leader in cell therapy. With our partners, we drive groundbreaking resear... Patient Advocacy Organization |
NSCF - National Stem Cell Foundation The National Stem Cell Foundation is a 501(c)3 non-profit organization that supports peer-reviewed r... Patient Advocacy Organization |
Opie Jones Foundation The Opie Jones Foundation is a UK-based charity inspired by Opie Jones, the 9th pediatric patient in... Patient Advocacy Organization |
Parent Project Muscular Dystrophy Duchenne is a fatal genetic disorder that slowly robs people of their muscle strength. Parent Projec... Patient Advocacy Organization |
Partners for Patients NGO OUR VISION: Solving Humanities Greatest Health and Education Challenges through public-private partn... Patient Advocacy Organization |
Prevent Blindness The mission of Prevent Blindness is to prevent blindness and preserve
sight. Focused on promoting a ... Patient Advocacy Organization |
Prevent Cancer Foundation The Prevent Cancer Foundation is a 501(c)3 nonprofit. The Foundation’s mission is saving lives throu... Patient Advocacy Organization |
Project 8p We have launched our first study researching chromosome 8p deletions and duplications in collaborati... Patient Advocacy Organization |
Share and Care Cockayne Syndrome Network Share & Care is a compassionate and experienced network of researchers, specialists, patients, and f... Patient Advocacy Organization |
Stop ALD Foundation WHAT IS ALD?
Adrenoleukodystrophy, or ALD, is a deadly genetic disease that affects 1 in 18 000 peop... Patient Advocacy Organization |