International EB community gears up for awareness week
Oct. 25-31 events aimed at raising funds for research, treatment
International Epidermolysis Bullosa Awareness Week is the last week of October — this year it’s Oct. 25-31 — and the epidermolysis bullosa (EB) community is coming together to raise awareness about the rare disorder and push towards new treatments.
“Raising awareness is critical because EB is often a rare disease, and as such, it is often unknown,” Margot Sosa, development associate at the Epidermolysis Bullosa Research Partnership (EBRP), told Epidermolysis Bullosa News. “Awareness not only changes that, it makes us unstoppable. The more people who know about EB, the faster we can build momentum for research, accelerate treatments that transform lives, and ultimately unlock cures for our community.”
EB is a group of rare diseases marked by abnormally fragile skin that’s prone to wounds and blistering. Awareness week is aimed at educating people about the condition.
The community has reason for hope. The EBRP and other groups have helped launch dozens of clinical studies testing new treatment approaches, and in the past two years, three EB treatments have been approved in the U.S., where none had been available before.
“In just over a decade, we’ve raised $70M to fund more than 160 promising research projects; actively transforming the EB landscape from 2 clinical trials to over 50 and accelerating 3 FDA-approved treatments in the last 2 years alone,” Katrina Parke, EBRP’s chief of staff, said in an email to Epidermolysis Bullosa News. “But while this momentum is exciting, our work is not finished. Our team is more committed than ever to driving extraordinary progress for EB and redefining how cures are found.”
Spreading the word in person, online
For this year’s awareness week, advocacy organization debra of America is encouraging community members in the U.S. to spread the word so more people can learn about EB. This may include handing out informational fliers, sharing facts and stories on social media, or asking local elected officials to make an official proclamation.
Community members are also hosting events and fundraisers for debra of America at sites across the U.S.
On the other side of the globe, debra Australia is sponsoring fundraising walks in several cities. Community members can also do a virtual walk.
“Walk for Wings is a great way to get outdoors and take part in our ongoing campaign to give support, encourage research and provide compassion to individuals and families with EB,” the organization said.
Debra Australia is also encouraging community members to turn their clothes inside out during the week as a symbol and conversation starter: Babies with EB often need to wear their clothes inside out because the seams in clothing can worsen skin damage.
“The EB community has taught me the true meaning of resilience,” said Michael Hund, CEO of EBRP, told Epidermolysis Bullosa News. “This is a community that lives with unimaginable daily challenges, but they still find ways to spark joy, advocate fiercely, and lift one another up. The lesson I carry with me every day is that progress is always possible when people come together with urgency and compassion. Together, we’re unstoppable.”
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