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

RAAP Events

Watch the recording of the RAAP Virtual Access Workshop (Presented by Gilead) from November 17, 2020

Spring Virtual Workshop

April 27, 2021 – 11:00am-12:30pm EDT

To attend: Click here to Register

Sponsorship Opportunities



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RAAP is excited to be hosting a Virtual Access Workshop and Awards for the rare disease community on November 17, 2020. Attendance is not limited, but registration is required. Registration is FREE for Patient and RAAP Member Organizations, $50 per attendee for Non-Member life sciences companies.

Please join RAAP, Members of Congress, Member Companies and Patient Organizations to learn more about RAAP (who we are, what we do), to engage in important discussions about access to care for rare disease patients, hear patient stories, and discuss how RAAP and our community members can move forward to affect necessary policy change at both the state and federal levels.

Awards Presented to:

Sen. Orrin G. Hatch

Rep. Diana DeGette

Rep. Fred Upton


10:30 am – Welcome (Michael Eging – Executive Director, RAAP)

10:40am – Why Access Matters (Robert Coughlin – President and Chief Executive Officer, MassBio)

10:45am – The November 2020 Election: Pathway for Innovation (Panelists: Ben Williams, JD, NCSL; Patrick Plues, BIO; Gene Ulm, Public Opinion Strategies; Evan Kozlow, RAAP)

With the elections behind us, this panel of election and policy leaders will provide insights into the impact at the State and Federal levels. The Presidency, the Senate and House and State leadership are all up for grabs and this will be a panel that you do not want to miss.

11:30am – Access in Private Sector Coverage and Medicaid (Panelists: Jeff Myers, Catalyst Healthcare Consulting; Braden Parker, Orchard Therapeutics; Kelly Maynard, Little Hercules Foundation; Patrick Plues, BIO)

Exploring trends within commercial insurance and the Medicaid programs (with an eye to the COVID-19 pandemic) that impact rare disease patient access to therapies.

12:15pm – Break

12:20pm – Federal Issues: Medicare to Pharmaceutical Reforms (Panelists: Mac Haddow, RAAP; Michelle Drozd, Gilead; Bonnie Washington, Aetna; Mike Eging, RAAP)

In 2019, a legislative effort was made to close the out of pocket payments for all patients in Medicare Part D, but both the House and Senate took very different approaches to the issues and recommendations. This panel will explore those solutions and pathways for reform in 2020 and beyond.

1:05pm – Innovative Payment Concepts (Panelists: Jason Slotnik, RAAP; Sloane Salzburg, CAHC; Bruce Pyenson, Milliman; Max Bronstein, MGB Consulting; Jeff Myers, Catalyst Healthcare Consulting)

Exploring innovative solutions that have been proposed to break down barriers in access to therapies. The panel will share insights into proposals and concepts that may provide 21st century solutions for reform efforts.

1:50pm – Break

2:00pm – Securing Innovation in Access – Cures 2.0 (Mac Haddow, RAAP; Annie Kennedy, Everylife Foundation; Katie Jones, Alexion)

In 2019, Congresswoman DeGette and Congressman Upton initiated a stakeholder dialogue regarding follow-up to the CURES Act. This panel will explore the focus of a follow-up effort, the key issues, and areas for engagement for the rare community.

3: 00pm – Rare Access Awards (Michael Eging, RAAP)

Senator Orrin Hatch, with his House and Senate colleagues, led the way in designing the pathway for rare medicines that continue encourage research, development, and commercialization of cutting-edge therapies. Across rare diseases, his contributions laid the foundations for to put these tools in the hands of specialists and patients. Join us in thanking Senator Hatch for his many years as a champion the rare disease community.

Congresswoman DeGette and Congressman Upton championed the major legislation known as the CURES Act to upend hurdles to bringing innovation to patients. In the process, their work unleashed the talents of not only life sciences companies, but also family foundation, academic researchers, and the support networks necessary to launch innovations forward.

3:15pm – Closing Remarks

Registration Information

RAAP Member Companies, Patient Organizations and Congressional Office Representatives can attend for FREE.

Non-Member Companies – $50/attendee

Register for this event by clicking below:

Register Here


For sponsorship and registration questions, please contact Katie Hoesch Casper at 732-977-6612 or [email protected]


Sponsorship Opportunities