Here are six things to know about the issue.
1. Previously, the search for cures has been left to the interplay among government agencies, university researchers and drug companies, according to the article.
2. Now, thousands of new charitable organizations, driven by the sequencing of the human genome and the rise of social media, have launched in recent years with the goal of underwriting, coordinating and even overseeing the research for cures, according to the article. These new organizations are known as venture philanthropies.
3. Larger and more established foundations, such as the Alzheimer’s Association, Michael J. Fox Foundation and the Spinal Muscular Atrophy Foundation, are investing millions not in the search for specific cures as well as for the biological tools and biomarkers any researcher or company could use, according to the article.
4. Smaller charities, the report notes, are trying to fund research assistants who search university laboratories for projects biotechnicians could adopt and move forward toward a cure. One such charity is the Fraxa Research Foundation, a nonprofit organization committed to finding a cure for the inherited disease Fragile X.
5. Membership lists of some foundations can be a key tool to help recruit patients for clinical trials, and foundations are increasingly playing a role in the Food and Drug Administration’s approval process, reports The New York Times.
6. Still, there are risks involved when it comes to venture philanthropy. For example, partnering with drug companies can create conflicts in organizations’ advocacy for patients and their families, according to the report.
For more on this story, read Gardiner Harris’ story in The New York Times.
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