This page serves as a resource for those seeking information about the future of AZEDRA (iobenguane i-131), how to get involved on this issue and information on other therapies.

The Advocacy task force has been working tirelessly since October 2023 to gather information on the discontinuation of AZEDRA, how this has affected metastatic patients in our community, and what replacement therapies are currently available for off-label use, in clinical trials, or on the horizon. To stay up-to-date, be sure to check back frequently for updates, follow us on social media and subscribe to our newsletter!

Pheo Para Alliance will be in Washington, DC during the week of February 25th-March 1st to take part in Rare Disease Week on Capitol Hill, an annual event organized by the EveryLife Foundation for Rare Diseases. Click here to learn how you can help us accomplish our goals for the week!

Metastatic Survey Results

what is the advocacy task force?

The Advocacy Task Force was formed in August, 2023 as a response to the announcement that Lantheus would be discontinuing production of AZEDRA in the first quarter of 2024. Its mission statement is as follows:

The overall purpose of the Advocacy Task Force is to create a strategy to support pheo para patients who will be affected by the unavailability of Azedra:

This support may include gathering information about access to alternative treatments, advocacy for the continued manufacture of Azedra, coordination with other organizations that may assist in the development of a strategy, patient education and communication and, more generally, addressing policy and political possibilities for protecting medical options for those with rare diseases.

are there other options?

Information on non-surgical treatments for pheo para can be found in our education pages devoted to each tumor type:

Pheochromocytoma

Paraganglioma

resources

When considering any non-surgical treatment plan with your doctor, you may find the following resources useful:

Insurance Denial Appeal Letter

National Cancer Institute (NCI) Information on Off-Label Drug Use in Cancer Therapy

American Cancer Society Information on Compassionate Use, Expanded Access and Right to Try

Clinical Care Guidelines

Clinical Trials

advocacy in action

2024 SNMMI Hill Day

2024 Rare Disease Week on Capitol Hill