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Rare Disease; Rarer Organization: How EB Research Partnership Drives Rare Disease Research

OnAir: Health Care

Release Date: 10/26/2022

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In this episode of OnAir: Health Care, Akin Gump senior policy advisor Matthew Hittle and consultant Dr. Mario Ramirez welcome Michael Hund of EB Research Partnership. Among the topics: ·         The severe challenges of the disease EB, or epidermolysis bullosa. ·         The venture philanthropy model of funding research into rare diseases. ·         Leading technologies in treating EB and other genetic diseases. ...

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In this episode of OnAir: Health Care, Akin Gump senior policy advisor Matthew Hittle and consultant Dr. Mario Ramirez welcome Michael Hund of EB Research Partnership.

Among the topics:

·         The severe challenges of the disease EB, or epidermolysis bullosa.

·         The venture philanthropy model of funding research into rare diseases.

·         Leading technologies in treating EB and other genetic diseases.

·         Research fundraising via the federal government.

To learn more, visit akingump.com and search for “health care.”