Press Releases

Global Genes Heads to Washington D.C. for Rare Disease Day Events

February 28, 2024

Global Genes CEO Charlene Son Rigby to participate in panel discussion at White House Forum during Rare Disease Week

ALISO VIEJO, Calif.Feb. 28, 2024 /PRNewswire-PRWeb/ — Charlene Son Rigby, CEO of the rare disease patient advocacy organization Global Genes, will serve on a policy panel at the White House Rare Disease Forum as part of a week-long series of events the organization will be participating in the nation’s capital leading up to World Rare Disease Day.

The forum, which takes place February 28, from 5:30 p.m. to 7 pm. EST at the White House Complex, Eisenhower Executive Office Building will be livestreamed. The event will bring together people living with rare diseases, their family members and caregivers, physicians and clinical care providers, researchers, and administration officials to drive progress against the nearly 10,000 known rare diseases that impact up to 30 million Americans. The participants will share their experiences, discuss areas of greatest challenge, and explore policy opportunities to advance research and access innovation.

“The activities taking place in Washington, D.C. on Rare Disease Day are a critical opportunity for patient advocates to share their stories, speak directly to policymakers, and effect change,” said Rigby. “Statistics, data, and the economic and societal costs of rare diseases tell a powerful story, and nothing is more compelling than putting all of that into the context of the lived experience of the people who make up this community to drive legislative action.”

Rare Disease Week, held each year on the last week of February, culminates in World Rare Disease Day, which is held on the last day of February. Because of leap years, it is considered the rarest day of the year. On that day, members of the rare disease community engage in activities to raise awareness about the prevalence of rare diseases, the need for improved diagnosis and treatments, and steps that can be taken to improve outcomes for people with these conditions.

In addition to the White House Rare Disease Forum, representatives from Global Genes will be joining the Rare Disease Legislative Advocates, a program of the Everylife Foundation for Rare Diseases, for its annual Rare Disease Week on Capitol Hill for a series of meetings between rare disease advocates and lawmakers.

Representatives from Global Genes will also participate in the National Institutes of Health’s Rare Disease Day at NIH on February 29, which will be livestreamed at https://videocast.nih.gov/. The event brings together the rare disease community for presentations on research advances, discussions, and stories from people with rare diseases. Global Genes will have a table at the event and will co-host a mid-morning coffee reception with the Everylife Foundation.

During the week, visitors to Washington, D.C. may spot rare disease advocates sporting zebra tails, a symbol of members of the rare disease community (get yours here). People are being encouraged to wear the tails as part of Global Genes #ZebraTales campaign to encourage advocates to share their stories (tales) of why they care about rare disease and why they work their tails off to improve the lives of those facing a rare disease.

Rare disease community members unable to attend Rare Disease Week can still participate by sharing their own zebra tale. Take a photo or video and tag @globalgenes and use hashtags #ZebraTales #CareAboutRare on social media. Suggestions on how to do this can be found on the Global Genes website. Be sure to tag a friend to keep the momentum going.

Global Genes full guide to World Rare Disease Day can be found at https://globalgenes.org/world-rare-disease-day/

“Rare disease patients and caregivers often feel isolated from peers, family, and a healthcare system that wasn’t designed to treat complex medical conditions. This was certainly the experience of my own family when my son Lucas was diagnosed with Menkes Syndrome, a rare genetic disease,” said Daniel DeFabio. “I have found that sharing your story can be a powerful, first step to ending the isolation, allies, and finding their voice as an advocate. That’s why we hope the #ZebraTales campaign will encourage others to share why they care about rare disease.”

About Global Genes
Global Genes is a 501(c)(3) nonprofit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. In pursuit of that mission, Global Genes connects, empowers, and inspires the rare disease community to stand up, stand out, and become more effective on their own behalf⁠—helping to spur innovation, meet essential needs, build capacity and knowledge, and drive progress within and across rare diseases. Global Genes serves more than 400 million people around the globe, and nearly one in 10 Americans affected by rare diseases. If you or someone you love has a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or through the website.

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