take action
advocacy task force
Initially formed in response to the discontinuation of AZEDRA (iobenguane I-131), the Advocacy Task force identifies policy issues and legislation which might affect those with pheo para, and helps inform the leaders in government and other advocacy groups about how their decisions result in real-world benefits or disadvantages for people like you.
read an august 2024 advocacy task force update here
2024 rare disease week on capitol hill
join the movement
Help strengthen the voice of our community and the rare disease community on Capitol Hill by asking your legislator to join the Rare Disease Congressional Caucus. Our partners at Rare Disease Legislative Advocates (RDLA) make it easy! (You’ll get an opportunity in this letter to inform your legislator about pheochromocytoma and paraganglioma.) Click the button below to get started:
write to congress
Pheo Para Alliance partners with many organizations to support legislation and policy initiatives that affect rare patients and their families. It’s important that your representatives in Congress hear from you, so that they understand how their decisions affect families like yours. Legislation and policy changes currently under consideration include
- Facilitating Innovative Nuclear Diagnostics (FIND) Act — This legislation seeks to increase Medicare beneficiary access to advanced diagnostic imaging
- Reducing Hereditary Cancer Act — This legislation aims to modify the Medicare statutes to enable coverage of potentially life-saving genetic counseling, testing, screening and risk-reducing interventions.
learn more and email your representatives today
- Cancer Drug Coverage Parity Act — This legislation will ensure equal insurance coverage of cancer treatments regardless of how they are administered.
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