Address: At the Rare Hub, 1012 14th Street NW, Suite 500 Washington, DC 20005


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 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.

RAAP At a Glance

THE RARE ACCESS ACTION PROJECT (RAAP)RAAP is a non-profit (501 c4) organization whose membership consists of patient advocates, emerging life science companies, and other rare disease stakeholders advocating for innovative solutions to reduce or eliminate barriers to rare therapies.


Michael Eging

RAAP Leadership Team

Mac Haddow

RAAP Leadership Team

Jayson Slotnik

RAAP Leadership Team

Katie Casper

RAAP Leadership Team

Evan Kozlow

RAAP Leadership Team


Michael Eging

Chairman of the Board

Shelly Rosenstock

Secretary of the Board

Jennifer Beachell

Member of Board of Directors,
Membership Development

Evan Kozlow

Treasurer of the Board

James Tyrell III

Counsel and Compliance


If your company or organization would like to explore opportunities to partner with RAAP, please complete the web form on our Contact page.