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 Membership

Join us if your organization represents patients and families, researchers and clinicians, or you are a corporation that support the Haystack Project’s mission, and want to work closely with our non-profit members on this mission. To learn about Industry Membership, contact Saira Sultan at


Individual Contributor

Join The Haystack Project as an individual. Be a part of representing the needs of the rare and ultra rare communities


Patient Advocacy Group Membership

Members are encouraged to “pay what you can” dues, generally, in the amount of $25-100/year.

If you are unable to pay the membership fee at this time, please click here and complete the contact us to join without dues.

Patient Group Membership
from 25.00
Membership Contribution: