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2020 Rare Disease Week: Join the Team

Updated: Feb 18, 2021

Rare Disease Week on Capitol Hill

As part of the rare disease community, we are all advocates. We push for inclusion and accommodations at schools, teach our doctors about our conditions, and try to stop parking on the white hashed area in the accessible parking spaces. Rare Disease Week allows us to advocate at the highest levels of the U.S. government to push for the more prominent issues such as healthcare, medical research through the NIH, and fast-tracking treatments through the FDA.

Inspired by other Cure CMD community members, I participated in the 2019 Rare Disease Week to have a voice in these issues, and I highly encourage you to join us in 2020. Rare Disease Week is a well-run event by the EveryLife Foundation and will take place February 25-28, 2020, in Washington DC. They provide training and a conference, set up all your appointments, and put our topics front and center with your senators and representatives. You'll work with other advocates from your state to visit as a team and meet up with other Cure CMD community members.

The event kicks off on Tuesday with the Rare Disease Congressional Caucus briefing on Capitol Hill. It is the most bipartisan caucus in Congress, and it's easy to see that this is something universally supported. Later that evening, you'll attend the welcome reception where you get to make new friends and get motivated for the week. The conference and training take place on Wednesday, where you meet fellow advocates from your state to learn about current rare disease topics from members of Congress, their staff, and government agencies. Breakout sessions in the afternoon include more detailed issues and training for first-time Rare Disease Week advocates. You won't be alone or unprepared. Thursday is the big day! Meetings are set up with 4-5 congress members, and your state team will get to venture into the congressional and senate buildings to meet your representatives or their staff. It's a gratifying day and you'll know you're making a difference. The week wraps up on Friday with a visit to the NIH to learn about the cutting-edge developments in research and treatments.

Outside of the event itself, the best part for me was meeting new Cure CMD friends. We met often throughout the week, grabbed dinners and lunches together, some shared an AirBnB, and we all left with new friendships.

It's a great community, and I hope you can join us in February!

Click here to apply for the Cure CMD Travel Stipend (must have applied for EveryLife Foundation Stipend to be considered) - Deadline January 10, 2020!

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