RARECast: Using Social Media to Find Rare Disease Patients for Clinical Trials

Moving a rare disease therapy from the lab to the marketplace requires patients willing to participate in clinical trials that can demonstrate its safety and efficacy. But given the small number of people who may have a specific rare disease, finding these patients can slow the development of new therapies and create a barrier to getting treatments to the patients who need them. We spoke to Sandra Shpilberg, CEO of Seeker Health, about the challenges drug companies face finding patients for rare disease drug trials, her firm’s efforts to combat that with its RarePatient database, and how the use of social media is changing the way drug developers connect with rare disease patients.

Daniel S. Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. He founded Levine Media Group in 2013 to provide strategic communications to life sciences companies. He is host of The Bio Report and RARECast podcasts, a senior fellow at the Center for Medicine in the Public Interest, and a member of the advisory board of the California Biotechnology Council.

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