Rare Disease Patients Invited to Join ‘What’s Your Story?’ Initiative

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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People affected by Lambert-Eaton myasthenic syndrome (LEMS) and other rare diseases in the U.S. are encouraged to share their experiences through a new initiative called “What’s Your Story?”

Submissions from patients, as well as caregivers and family members, are being accepted through March 2 via an online form. Three respondents will be randomly selected to win $1,500 in donations to a rare disease advocacy organization of their choice.

Respondents will be asked to provide their name and contact information, relationship to the rare disease community, and demographic information such as gender and race. They will also be asked to share their experiences about accessing treatments, receiving a diagnosis, discrimination, barriers to accessing healthcare, and the COVID-19 pandemic.

Participants will be able to upload photos or a short video to illustrate their journey with a rare disease. Questions may be left blank. Respondents are encouraged to share as much or as little as they feel comfortable doing.

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The initiative is sponsored by the EveryLife Foundation for Rare Diseases, a nonprofit, nonpartisan organization that advocates for policies to improve the lives of people affected by rare diseases.

“Sharing stories is one of the most powerful ways that we, as a rare disease community, can change policy and save lives,” the organization stated in a webpage about the initiative. “When a story captures the attention of policymakers, they are more likely to absorb the policy information we are conveying to them, more so than with facts and figures alone.”

Submitted stories may be shared, in part or in full, with members of Congress or used as part of rare disease advocacy efforts. They also may be included in EveryLife’s publications, presentations, website, or social media.

To ensure privacy, only the respondent’s first name, last initial, city, and state will be shared with their story. Not every story will be shared publicly. Respondents may be contacted by an EveryLife staff member to learn more about their story or hear about potential opportunities to share it more publicly.

EveryLife is advocating for passage of the STAT Act, legislation enabling policy changes at the U.S. Food and Drug Administration to speed up development of rare disease therapies.