Join the Haystack Project

Pursuant to federal tax law, 501(c)(3) members are allowed to allocate up to an “unsubstantial” (generally 5% -10%) percentage of their budgets on lobbying activities without in any way jeopardizing their tax exempt status.

Member benefits

  • Receive advocacy updates.

  • Participate in monthly policy calls.

  • Attend in-person meetings.

  • Advise on content -- and have the opportunity to sign on -- to letters to policymakers on ultra orphan issues.

  • Participate in Hill and other meetings as appropriate.


Industry Sponsorship

To learn more about sponsorship opportunities, please contact Saira Sultan at


Patient Advocacy Group Membership

Join the Haystack Project as a Patient Advocacy Group below.

Patient Group Membership
from 25.00
Membership Contribution:

Prefer to contribute a different amount? Contact us to learn more.