Organization Profiles

This first-of-its-kind inventory was designed to help potential collaborators better understand the landscape of nonprofit disease research foundations and engage in meaningful partnerships with them. Using a set of common metrics, it highlights key details about each organization’s research portfolio, collaboration efforts and financials.

TRAIN organizations are also invited to become members of Patients Count Network, a complement to TRAIN Central Station where innovators can identify potential partners, learn about current trends in venture philanthropy, and benchmark progress.

In 2017, organization profiles in Patients Count Network will replace the TRAIN Inventory below.

TRAIN members who decline to participate in Patients Count Network will have their organization's 2014 profile visible through March 31, 2017.

We hope these resources will be of value to individuals hoping to better understand the landscape of nonprofit disease research foundation players and to engage in meaningful partnerships with them. 


Click on the organization name to view the full profile.

 

  Funds Medical Research Grants Partners with Biotech and Pharma Implements Advocacy Efforts Ask Us About...
Accelerate Brain Cancer Cure - Building research collaborations
- Investing in biopharma companies
- Partnering with industry
Accelerated Cure Project for Multiple Sclerosis
Adenoid Cystic Carcinoma Research Foundation
Adult Polyglucosan Body Disease Research Foundation
AKU Society - Building research collaborations
Alliance for Aging Research
Alliance for Lupus Research
Alpha-1 Foundation
ALS Therapy Development Institute
Alzheimer's Association
Alzheimer's Drug Discovery Foundation
American Heart Association
Amyloidosis Research Consortium, Inc. - Building research collaborations
- Maintaining a patient registry or biobank
- Partnering with industry
Association of Medical Research Charities - Development of tools and resources
- Facilitating patient engagement in the R&D process
- Partnering with industry
Asthma and Allergy Foundation of America
Autism Speaks
BCM Families Foundation - Building research collaborations
- Partnering with industry
Beyond Batten Disease Foundation - Building research collaborations
- Development of tools and resources
- Evaluating organizational performance
Bonnie J. Addario Lung Cancer Foundation and Addario Lung Cancer Medical Institute
Cancer Research Institute
Charcot-Marie-Tooth Association
Charley's Fund
Children's Tumor Foundation
Chordoma Foundation - Development of tools and resources
- Maintaining a patient registry or biobank
- Working with CROs
Citizens United for Research in Epilepsy
COPD Foundation
Crohn's & Colitis Foundation of America - Building research collaborations
- Facilitating patient engagement in the R&D process
- Partnering with industry
Cure Alzheimer's Fund
Cure SMA - Facilitating patient engagement in the R&D process
- Maintaining a patient registry or biobank
- Partnering with industry
CureDuchenne - Innovative funding models
- Investing in biopharma companies
- Partnering with industry
Cystic Fibrosis Foundation - Innovative funding models
- Maintaining a patient registry or biobank
- Partnering with industry
Damon Runyon Cancer Research Foundation - Evaluating organizational performance
- Innovative funding models
- Strategic planning
Dr. Susan Love Research Foundation
Epilepsy Therapy Project & Epilepsy Foundation
Food Allergy Research & Education
Foundation Fighting Blindness
Foundation for Prader-Willi Research - Interaction with regulatory agencies
- Building research collaborations
- Maintaining a patient registry or biobank
Foundation for Sarcoidosis Research - Maintaining a patient registry or biobank
- Partnering with industry
- Strategic planning
Focused Ultrasound Foundation - Building research collaborations
- Innovative funding models
- Partnering with industry
Free to Breathe - Building research collaborations
- Clinical trial design and recruitment
- Development of tools and resources
- Facilitating patient engagement in the R&D process
- Partnering with industry
- Social media and communications
- Strategic planning
Friedreich's Ataxia Research Alliance - Building research collaborations
- Clinical trial design and recruitment
- Maintaining a patient registry or biobank
Hide and Seek Foundation
Hydrocephalus Association
International AIDS Vaccine Initiative
International Mental Health Research Organization
JDRF
Jonah's Just Begun
Leukemia & Lymphoma Society
Life Raft Group - Development of tools and resources
- Maintaining a patient registry or biobank
- Partnering with industry
Limb Girdle Muscular Dystrophy 2I Research Fund
LUNGevity
Lymphoma Research Foundation
Melanoma Research Alliance - Building research collaborations
- Evaluating organizational performance
- Partnering with industry
Michael J. Fox Foundation for Parkinson's Research - Building research collaborations
- Development of tools and resources
- Partnering with industry
MPN Research Foundation
Multiple Myeloma Research Foundation
Muscular Dystrophy Association
Myeloma UK - Building research collaborations
- Clinical trial design and recruitment
- Facilitating patient engagement in the R&D process
- Partnering with industry
Myotonic Dystrophy Foundation - Facilitating patient engagement in the R&D process
- Interaction with regulatory agencies
- Partnering with industry
National Brain Tumor Society - Building research collaborations
- Interaction with regulatory agencies
- Partnering with industry
National PKU Alliance - Social media and communications
- Strategic planning
National Psoriasis Foundation - Facilitating patient engagement in the R&D process
- Interaction with regulatory agencies
- Social media and communications
National MS Society
NephCure Kidney International - Clinical trial design and recruitment
- Innovative funding models
- Partnering with industry
New York Stem Cell Foundation
Nicholas Conor Institute for Pediatric Cancer Research
One Mind For Research
Pancreatic Cancer Action Network
Parent Project Muscular Dystrophy
Parkinson's UK - Clinical trial design and recruitment
- Facilitating patient engagement in the R&D process
- Interaction with regulatory agencies
Primary Ciliary Dyskinesia Foundation - Building research collaborations
- Clinical trial design and recruitment
- Social media and communications
Progeria Research Foundation
Prostate Cancer Foundation
Rare Genomics Institute - Building research collaborations
- Innovative funding models
Rare Cancer Research Foundation
Rett Syndrome Research Trust
Rick Hansen Institute - Strategic planning
Scleroderma Research Foundation - Building research collaborations
- Partnering with industry
Solve ME/CFS Initiative
Susan G. Komen for the Cure
T1D Exchange, a program of Unitio, Inc. - Clinical trial design and recruitment
- Facilitating patient engagement in the R&D process
- Partnering with industry
Translational Genomics Research Institute
Tuberous Sclerosis Alliance
UsAgainstAlzheimer’s - Clinical trial design and recruitment
- Facilitating patient engagement in the R&D process
- Maintaining a patient registry or biobank
VascularCures - Building research collaborations
- Maintaining a patient registry or biobank
- Partnering with industry