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What’s Your Story?

Jan 25, 2022

The EveryLife Foundation for Rare Diseases launched What’s Your Story?, an online rare disease story bank for advocates like you to share your experiences on a wide-range of issues impacting the rare disease community.

What’s Your Story? presents a series of questions covering topics ranging from difficulty in getting diagnosed to challenges in gaining access to therapies, to facing discrimination in the workplace and more.  You are also invited to upload photos and videos that help illustrate your rare disease journey.  Advocates of any age are welcome to submit stories.

Stories submitted through What’s Your Story? will help advance rare disease policy priorities through ongoing advocacy efforts to advance the equitable development of and access to lifesaving diagnoses, treatments, and cures.  Submissions may be shared during meetings with Members of Congress or with the public via social media, online or in the press.

Visit the What’s Your Story? story bank to learn more and submit your story.