debra of America

🎉 The 2024 debra Care Conference (DCC) was truly unforgettable, and it’s all thanks to YOU—our incredible community of EB warriors, families, researchers, and advocates! 💪 We were so inspired by the insightful talks and speakers who shared their knowledge and hope with us. And let’s not forget the fantastic social events that brought us closer together, sparking new friendships and creating lasting memories! 🌟 A heartfelt thank you to all our sponsors, speakers, volunteers, and attendees who made this event so special. Keep an eye out for more photos and videos from the conference coming soon! #DCC2024 #debraCareConference  

Celebrating 10 years of #dash4debra! 🎉👟 This inspiring, family-friendly fun run is hosted by the amazing Megan Gosselin, who lives with Epidermolysis Bullosa (EB). For a decade, Megan has united people from all over the country to fight EB. This year, she’s already brought together 28 amazing individuals in support of this year’s milestone event! Join Megan, EB families, and friends on Sunday, August 25 in Lake Forest, IL, or participate virtually from anywhere! Whether you're running, walking, or cheering from the sidelines, we would love to have you with us. Learn more and sign up at https://lnkd.in/gS_6_4fa

🎉 The wait is over! 🎉 The 2024 #debraCareConference kicks off tomorrow in Atlanta, GA! We are beyond excited to welcome our amazing Epidermolysis Bullosa (EB) Community for four days of connection, education, and FUN!✨ 📸: Memories from DCCs past! #DCC2024 #StrongerTogether

Castle Creek Biosciences, Inc. is joining our dedicated group of 2024 debra Care Conference (DCC) sponsors! 🎉 The Castle Creek team is developing D-Fi, an innovative gene therapy for the treatment of Dystrophic Epidermolysis Bullosa (DEB). ⏰In just 2 DAYS, you’ll have the opportunity to meet the Castle Creek team and our other industry partners at the 2024 DCC! #debraCareConference #DCC2024

🌟 Meet Leandro, our Awesome Intern! 🌟 Leandro, a student at Washington International School, has EB Simplex and is using his experience to make a difference in the Epidermolysis Bullosa (EB) Community. We are so grateful to have Leandro on our team and are thrilled to spotlight him in honor of #NationalInternDay! Check out our latest blog post to read more about Leandro and the impact that he's making. 👇

Calling all runners! Ready for your next adventure? 🏃♂️🏃♀️ Join #TEAMDEBRA in these upcoming events to make a real impact on those living with “The Worst Disease You’ve Never Heard Of,” Epidermolysis Bullosa (EB): 👉 October 6: Medtronic Twin Cities Marathon in Minneapolis/St. Paul, MN 👉 October 12: Queen Bee Half Marathon in Cincinnati, OH 👉 October 29: Irish Life Dublin Marathon in Dublin, Ireland 👉 March 16: Los Angeles Marathon in Los Angeles, CA Learn more and sign up at https://lnkd.in/gDve7zAc #TwinCitiesMarathon #QueenBeeHalf #DublinMarathon #LAMarathon

Abeona Therapeutics is joining our dedicated group of 2024 debra Care Conference (DCC) sponsors! 🎉 The Abeona team is developing Pz-cel, a promising treatment for Recessive Dystrophic Epidermolysis Bullosa (RDEB) that heals wounds and reduces pain. ⏰In just 6 DAYS, you’ll have the opportunity to meet the Abeona team and our other industry partners at the 2024 DCC! We can’t wait to see you in Atlanta! #debraCareConference #DCC2024

From the moment of diagnosis, debra of America provides a full support system to families navigating Epidermolysis Bullosa (EB), a rare and complex genetic disorder that causes extremely fragile skin. Our New Family Advocate Program is a lifeline for parents seeking guidance, support, and expertise on caring for their loved one with EB. ❤️ Learn more at https://lnkd.in/g2ukseD7

Meet the Linchangco family, who are participating in this year’s #dash4debra in honor of their sweet 6-month-old son, Leonel, who was diagnosed with Epidermolysis Bullosa Simplex (EBS). ❤️ They share, "Before Leonel, we had never known about EB, so it was quite a shock when he entered this world with missing skin on several parts of his body. We had to put aside our feelings in order to learn as much as possible about EB so that we could care for our son appropriately. Since day one, Leonel has shown us what resilience truly looks like and he displays it with the most infectious smile. Every day, we continue to hope for scientists to find a cure for this debilitating condition so that no baby has to endure such pain." Support the Linchangco family’s efforts by donating towards their fundraising goal at https://lnkd.in/gmb9Z3K2 Join the Linchangco’s and other EB families and friends at dash4debra, a family-friendly fun run fundraiser on Sunday, August 25, 2024 in Lake Forest, IL. 🏃🦋 Can’t make it in person? There’s a virtual participant option! Sign up at https://lnkd.in/gMyiN7eE

Strides are being made in rare disease advocacy on Capitol Hill! 🌟 Earlier this week, our Executive Director Brett Kopelan was on Capitol Hill advocating for important legislation for rare disease patients and discussing key issues with senior leaders from the Centers of Medicare and Medicaid. Our focus is to ensure access to out-of-state doctors and advanced therapies for those with rare diseases. Get ready for more government advocacy updates at the debra Care Conference (DCC) in just 10 DAYS! See you there, EB Community! #debraCareConference #DCC2024