Join Pheo Para Alliance in Washington, DC during the week of February 25th when we’ll meet up with other rare disease advocates to talk to our legislators about issues facing our community! This year’s event is an especially important one for those with pheo para: our metastatic patients no longer have access to a therapy approved by the FDA for the treatment of pheo para, and we’re hoping to work with our legislators to keep other therapies accessible and as affordable as possible.
WHO?
You, your family members, friends and other allies in your fight against pheo para!
WHAT
Attend the Rare Disease Week meetings with members of Congress from your state to discuss how they can help patients with metastatic pheo para
WHEN
Week of February 25th, 2024
WHERE
Capitol Hill, Washington, DC
WHY
The only FDA-approved treatment for pheo para was discontinued by its manufacturer late last year. As a result, patients with metastatic disease are encountering insurance denials and other barriers to care.
HOW?
Contact Aimee Powell for information on how to register, meet us and pick up your materials.