Humanizing the support of patients living with a Rare Disease
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Humanizing the support of patients living with a Rare Disease
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"The profoundly personal side of rare disease: Humanizing the therapeutic journey of patients" : a free podcast recorded during a webinar organized by Science Magazine and Fondation Ipsen.
Health care systems are not equipped to provide the psychological and social support patients need. Genetic counseling is complex in the setting of undiagnosed patients. Layered on this is the complexity of supporting the mental or physical disabilities that many patients with a rare disease must manage, whether they have a diagnosis or not. The humanistic support of patients with rare diseases and their families needs to improve. In this webinar, you’ll meet experts who struggle with these issues and can help guide us on how to do better.
Our guests:
Kathleen Bogart, Ph.D. (Oregon State University, Corvallis, Oregon)
Amrit Ray, M.D., M.B.A. (Physician researcher/Rare disease advocate, New Haven, CT)
Alanna Yee (Encephalitis411, Edmonton, Canada)
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