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Patient Advocacy: Top Grant-Giving Disease Foundations

June 24, 2014

This is the third Blog Post in a series that examines the influence and power of patient advocacy groups, foundations, and alliances in helping and influencing clinical research and the different stages of drug development in the rare disease and orphan drug space.

Last week, GEN (Genetic Engineering & Biotechnology News), publishes an online list of the top 30 Nonprofit Disease Foundations (2014 Edition) that give grants and awards for research. The Nonprofit Disease Foundations are ranked by the percentage of total revenues spent on grants/awards, based on “audited consolidated financial statements.”

The chart below identifies the top 10 Nonprofit Disease Foundations plus the rare disease foundations ranked among the 11-30. The data in the chart below is from the online article published in GEN (Genetic Engineering & Biotechnology News).

Top Nonprofit Disease Foundations

GEN Rank # Disease Foundation Name % of Revenues Awarded Amount of Research Grants/Awards(Approx in Millions)
1 Melanoma Research Alliance Foundation 85.5% $7.431
2 Cancer Research Fund of the Damon Runyon-Walter Winchell Foundation 73.6% $12.346
3 Rheumatology Research Foundation 65.9% $11.006
4 The Michael J. Fox Foundation for Parkinson’s Research 63.0% $55.356
5 Alzheimer’s Drug Discovery Foundation 60.2% $7.462
6 Juvenile Diabetes Research Foundation 51.5% $106.005
7 Parkinson’s Disease Foundation 49.1% $4.955
8 Myelin Repair Foundation 37.9% $1.749
9 Brain Research Foundation 35.8% $0.992
10 Foundation Fighting Blindness 32.3% $14.408
12 Cystic Fibrosis Foundation 24.8% $73.801
14 The ALS Foundation 23.3% $5.993
16 Muscular Dystrophy Association 21.8% $34.624
17 PKD Foundation 18.3% $1.696
22 Chordoma Foundation 13.4% $0.250


The article concludes that :

“ … the foundations offer valuable help to researchers—not just a shower of cash, but targeted funding programs and perhaps most important, communities with which to share knowledge and collaborate on future studies. Their role in funding research can be expected to grow in coming years.”

Please Note: “Kid Hugging a Rainbow” by Marendo Müller, artwork (Own work) [Public domain] | Wikimedia Commons.

Copyright © 2012-2014, Orphan Druganaut Blog. All rights reserved.

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