WHO WE ARE

The Rare Access Action Project (RAAP) began in 2017 as an ad hoc coalition of life sciences and patient stakeholders focused on advocating for solutions to rare disease access to health care. The organization has evolved and is now a non-profit that is engaged in ongoing initiatives on both the Federal and State levels.

RAAP is committed to exploring policy solutions to address structural issues in access and coverage. RAAP will engage with research, public education, issue advocacy, and lobbying activities to shine a light on the challenges facing rare disease patients; and offer common sense solutions to them.

RAAP LEADERSHIP

RAAP is led by Michael Eging. For 25 years, Mike has worked as a life sciences professional in Global, State and Federal Government Affairs, Advocacy, Communications and Market Access. With 12 years advocating on behalf of rare disease issues, Mike is a passionate advocate for solutions that make a difference in the lives of patients without a voice.