DEE P connections and haystack

Haystack Webinar: Protecting Rare Patient Access to Off-Label Treatments

Protecting Rare Patient Access to Off-Label Treatments

Have insurance companies or Medicaid refused to cover critical prescribed treatments claiming they were off label and not “medically necessary”? Is coverage denied because treatments that may work for you or your child are not on a compendia – a compilation of evidence-based, off label treatment options?

Join with other rare disease patients/families to learn simple ways YOU can encourage Congress to protect rare diseases patients so they are no longer denied coverage of needed off-label treatments. Haystack Project is working on legislation to give critical protection to those struggling with rare disorders – most of which have NO approved on-label treatment!

Join our partners at Haystack Project to learn more! YOU can help make sure rare and ultra-rare patients can get their critical off-label drugs covered!

Monday May 22, 2023 12:30-1pm ET
Register at


May 22 2023


12:30 pm - 1:30 pm


Partner Webinars

Additional Information