Haystack Project is a non-profit dedicated to ensuring patients with rare and ultra-rare diseases have access to the treatments they need. It brings together patient organizations to learn from each other and advocate for better care. A core focus of Haystack Project is shaping healthcare policies that address the unique challenges of rare diseases. By developing policy solutions and effectively sharing them with decision-makers, the organization works to influence payer policies, promote innovation, and improve access to care for patients facing these conditions.
The Cutaneous Lymphoma Foundation is a member of the Haystack Project. As a member organization, the Foundation is provided with regular advocacy updates, is invited to advise on content and sign on to letters to policymakers, and participate in Capitol Hill and policy-related meetings as appropriate.
Currently our CEO, Susan Thornton serves as the Chairman of the Haystack Project Board and is a patient representative.