RARE ACCESS
ACTION PROJECT

RAAP is a coalition of life sciences and patient stakeholders that explores creative policy solutions to address structural issues in access and coverage. Our priority is to help ensure rare disease patients have access to the care and treatments that they need.

Who We Are

THE NEED
FOR ACTION

The life sciences community has created a long list of medical breakthroughs for people with rare diseases. Many additional significant advances are likely during this new decade. However, the U.S. health care system has been unable to keep pace to make these innovations widely available to patients.

2024 PDAB Webinar Series

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Creating a Win-Win for Rare Disease Patients, HCPs & Payers

As many as 30 million Americans currently live with a rare disease. The U.S. Food and Drug Administration (FDA) defines an orphan (rare) disease as a condition that affects fewer than 200,000 people nationwide. Some rare diseases have patient populations of fewer than one hundred people.

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INITIATIVES

“Action” is a key component of who we are and what we do. While think tanks play important roles for advancing science, medicine and policy, the Rare Access Action Project (RAAP) focuses on specific, achievable and measurable campaigns designed to support the rare disease community and its various stakeholders.