march monthly peer support meeting

March 5, 2024

Join us as we share and connect about our pheo para journey in a monthly meeting led by patients just like you. Everyone will have an opportunity to introduce themselves and share.

This is an online meeting conducted via Zoom, where we can see and hear each other. Please note that all participants must introduce themselves to the group at the beginning of the meeting through either video or voice.

Our March 5th meeting begins promptly at 4:30 PM Pacific/7:30 PM Eastern.

meet us in dc for rare disease week on capitol hill

Mr. Phearless Returns to Washington!

February 25 – March 1, 2024

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.