Rare Disease; Rarer Organization: How EB Research Partnership Drives Rare Disease Research
Speakers: Mario Luis Ramirez
In this episode of OnAir: Health Care, 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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