Today, the EveryLife Foundation for Rare Diseases launched What’s Your Story?, a new online rare disease story bank for advocates to share their experiences on a wide-range of issues impacting the rare disease community. Patients, caregivers, medical professionals, policymakers, researchers, and anyone touched by rare disease is invited to share their story using the online form. Any rare disease advocate who submits a story by the final day of Rare Disease Week on Capitol Hill on March 2, 2022, will be entered to win a $1,500 donation in their name to the patient advocacy organization of their choice.
“Sharing stories is one of the most powerful ways that we, as a rare disease community, can change policy and save lives,” said Britta Dornan, EveryLife Foundation for Rare Diseases Senior Director of Communications and Marketing. “When a story captures a policymakers’ attention, they are more likely to absorb the policy information we are conveying to them, more so than with facts and figures alone. Stories are pathways to treatments and cures.”
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.
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. Advocates are invited to upload photos and videos that help illustrate their rare disease journey.
Advocates of any age are welcome to submit their story. Those under the age of 18 are asked to provide parent or guardian contact information to confirm consent.
Visit the What’s Your Story? story bank to learn more and submit your story.
