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.
Receive 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.
Participate in Hill and other meetings as appropriate.
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....
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.