debra of America

“The first response from the nurses in the NICU was, 'we recommend you don’t Google the diagnosis, and you need to reach out for support.’” - Nicole, mom to Hayden Learning that your child has EB can be daunting. debra of America’s New Family Advocate Program serves as a lifeline when there is nowhere else to turn, providing essential education, wound care supplies, and ongoing support for new families. ❤️ Learn more and get help at https://lnkd.in/gab7KaQD

Tomorrow: EB Simplex Research Webinar! 🧬 Join Dr. Joyce Teng from Stanford University for a webinar on the latest advancements in EB Simplex therapy, including clinical trials and drug development. Don’t miss this opportunity to learn and ask questions! 📅 Thursday, December 12, 2024 ⏰ 4:00-5:30 pm EST 🔗 ️RSVP on EB Connect at https://lnkd.in/gxpPzQxa

🌴Join #TEAMDEBRA in Miami!🌴 Time is running out—the deadline to sign up for the LIFETIME #MiamiMarathon is December 20! Take on this exciting race on February 2, 2025 in support of individuals and families affected by Epidermolysis Bullosa (EB). Run through beautiful beaches, vibrant neighborhoods, and the iconic Art Deco district, all while fighting EB! 🏃🎉 👉 Claim your bib at https://lnkd.in/gsgEMZmT

Advocating for Access to Genetic Testing for Rare Diseases!✊🧬 We’re proud to lead advocacy efforts alongside the Personalized Medicine Coalition to improve healthcare access for those living with EB and other rare diseases. Together, we’ve drafted a sign-on letter to the Centers for Medicare and Medicaid Services requesting coverage for critical genetic testing to help reduce barriers to accurate diagnoses and better care. Read more. 👇

🎉 Start the year strong with #TEAMDEBRA! 💪 As the new year approaches, it’s time to set new goals, embrace new challenges, and fight EB! Join our endurance team in these exciting 2025 events: 🏅 LIFETIME Miami Marathon (2/2/2025) 🏅 United Airlines NYC Half (3/16/2025) 🏅 Los Angeles Marathon (3/16/2025) 🏅 Flying Pig Marathon Weekend (5/3/2025) 🏅 TD Five Boro Bike Tour (5/4/2025) 🏅 Bank of America Chicago Marathon (10/12/2025) 🏅 BMW Berlin Marathon (9/24/2025) Claim your bib at https://lnkd.in/gBMXeg3f (📸: #TEAMDEBRA runner, Tim Sutton, at the 2024 Berlin Marathon)

"We all know the difficult moment when you state to a new doctor or nurse that you have EB and they immediately excuse themselves to go Google the disease. It would almost be funny if it didn’t result in harm being caused.” - Raqual R., living with EB. Epidermolysis Bullosa (EB) remains widely unknown in the medical community, leaving families to face overwhelming challenges in finding proper care. In 2025, we are setting an ambitious goal to bridge this knowledge gap and ensure better care for those with EB. Learn more about how we plan to address this issue and support our efforts by donating in honor of #GivingTuesday at https://lnkd.in/gAkrsgwD (📸: The Boughner Family ❤️)

What causes Epidermolysis Bullosa (EB)? EB is caused by a genetic defect in the protein that connects the layers of the skin. This makes the skin fragile, prone to blisters, and susceptible to tears from even the smallest friction. But EB isn’t just about the skin—it can also affect the mouth, esophagus, airway, muscles, heart, kidneys, nails, teeth, and more. 🔍 Learn more about EB at https://lnkd.in/gfn4R78s [📸: Sarah & Armando, living with EB]

RSVP for our next research webinar! 🧬 Join Dr. Joyce Teng from Stanford University for a webinar on the latest advancements in EB Simplex therapy, including clinical trials and drug development. Don’t miss this opportunity to learn and ask questions! 📅 Thursday, December 12, 2024 ⏰ 4:00-5:30 pm EST 🔗 ️RSVP on EB Connect at https://lnkd.in/gqD-BJbR

Since 1980, debra of America has been a lifeline for thousands of families impacted by Epidermolysis Bullosa (EB) — “The Worst Disease You’ve Never Heard Of.” We fight EB on all fronts by delivering critical programs and services, empowering through education, driving advocacy, and advancing groundbreaking research. ❤️ But we can’t do it without your support. Help ensure that our life-changing work continues at https://lnkd.in/gKpJFweC [📸: Leah and her big sis]

Exciting EB Research News!✨🧬 The U.S. FDA has accepted Abeona Therapeutics’ resubmitted Biologics License Application for Pz-cel and is now reviewing the gene therapy for the treatment of Recessive Dystrophic Epidermolysis Bullosa (RDEB). Approval decision is expected by April 29, 2025! Read more on our blog 👇