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! This annual event is organized by the EveryLife Foundation for Rare Diseases, and is a week when patients, caregivers and advocates from throughout the rare disease community come together to raise awareness about the challenges those affected by a rare disease face and the need for improved access to treatments. We’ll meet with legislators, educate them about pheo para, and share how the discontinuation of AZEDRA, the only FDA-approved therapy for metastatic pheo para, has affected us all.
Because we have patients in every state who are represented by hundreds of legislators, we need YOU to support us in this mission! Here’s how you can help:
- Reach out to your representatives in Congress this week, share your personal story, and ask them to support legislation which will help preserve/improve access to therapies our patients need. To make it easier, we’ve even written letters you can customize!
- Download a customizable letter and a copy of our Rare Disease Week 2024 Legislative One-Page you can include
- Click here to find contact information for your members in Congress!
- Share with your friends by posting on social media using the hashtags #PhearlessInDC, #RareDiseaseWeek, #ShowYourStripes and #EveryVoiceMatters. And, as always, let everyone know you’re #PheoParaPhearless !
- Help promote awareness by downloading and using our social media cover photo and profile images !
- Urge your members of Congress to support funding for the National Institutes of Health (NIH)
There’s also still time to register and participate in some events virtually this week: