metastatic survey results

provided by the Advocacy Committee

In late 2023, Pheo Para Alliance launched a survey to gather information to develop a strategy to best support metastatic patients following the announcement regarding the cease of production of Azedra, the only FDA approved treatment for metastatic and unresectable pheochromocytoma and paraganglioma in late 2023.  Fifty three clinicians from twenty-eight centers participated globally.

This survey was created as part of the Advocacy Committee.

View the results of the survey here.

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.