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Advocacy Task Force

To ensure the needs of our community are met as Lantheus prepares to halt production of AZEDRA  in early 2024, Pheo Para Alliance has created the Advocacy Task Force. The mission of the 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.

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