Items Tagged ‘rare diseases’

June 11, 2019

Remarkable opportunity to make a profound difference

By Dan Hinmon, MCSMN Director DanHinmon

When our first daughter Eliza was born she was absolutely beautiful and seemed perfect in our eyes. After about a week her skin became sallow. We suspected jaundice, so we did what every good parent did at the time in these cases. We stripped off her clothes and placed her safely on the window ledge, […]

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Tags: Community Development, rare diseases

April 10, 2017

Webinar: Physicians, Patients & Rare Diseases on Social Media

By Dan Hinmon, MCSMN Director DanHinmon

On July 26, 2016, we hosted a webinar with Dr. Joseph Dearani, chair of the Division of Cardiovascular Surgery at Mayo Clinic, and a patient, Cynthia Burstein Waldman. Although our webinars are generally limited to premium members, we open three webinars each year to basic members and the public as well. This webinar was one of the […]

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Tags: Cynthia Burstein Waldman, Dr. Joseph Dearani, Facebook, Lee Aase, rare diseases, webinar

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