take action

2024 rare disease week on capitol hill

read about our February 2024 week in dc here!

advocacy task force

Looking for information on the planned discontinuation of AZEDRA?

learn more

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:

make a difference

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

learn more about the FIND act

  • 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.

support cancer drug coverage parity now

other ways to take action

find out how you can support the pheo para cause!

learn more