[Podcast] Rare Disease; Rarer Organization: How EB Research Partnership Drives Rare Disease Research

Matthew Hittle, Mario Luis Ramirez
Akin Gump Strauss Hauer & Feld LLP
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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.

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