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.

Patient Advocacy Group/Industry Membership

Join us if your organization represents patients and families, researchers and clinicians, or you are a corporation that support the Haystack Project: Ultra Rare Strategies’ mission, and want to work closely with our non-profit members on this mission....

Member benefits

  • Receive weekly advocacy updates
  • Participate in weekly policy calls.
  • Advise on content -- and have the opportunity to sign on -- to letters to policymakers on ultra orphan issues.  Topics relaed to our mission  (
  • Participate in Hill and other meetings as appropriate.

Members are encouraged to pay dues in the amount of $25-100/year.

Please note: Joining is a 3-step process. You will be directed to PayPal to log in an authorize your payment. After authorizing your payment, you will be redirected to the website to complete your purchase.

After joining, your logo will be added to our “Partners” list and clicking on the logo will redirect readers to your website.

If you are unable to pay the membership fee at this time, please click here and complete the contact us to join anyway for now.

Industry & Patient Group Membership
from 25.00
Membership Contribution: