4/1/2020 IMPORTANT UPDATE
At debra of America, the safety and well-being of our EB Community is our top priority. Given the ongoing COVID-19 pandemic, we have made the difficult decision of cancelling the 2020 debra Care Conference (DCC).
Click here to watch a video update from Executive Director, Brett Kopelan.
For those who have registered and submitted payments for the conference, please know that we will be contacting you directly to issue full refunds.
The next debra Care Conference will be held in the Summer of 2021. If you have any questions, please email firstname.lastname@example.org.
Designed for you to stay at the forefront of EB care & research, debra of America brings together over 600 attendees once every two years for the debra Care Conference (DCC).
This multi-day event is designed specifically for EB families and the professional community to access the best information, discover new ideas and connect with other EB families from all over the country. It is an extraordinary opportunity for those with EB and their caretakers to make long lasting connections and learn from experts in the field.
As an attendee, you can expect:
- 4-night stay at the Omni Atlanta Hotel at CNN Center, an all indoor, temperature-controlled luxury hotel, located 12 miles from the Hartsfield-Jackson Atlanta International Airport.
- Access to more than 30 educational sessions including presentations from top medical professionals on a broad range of areas in EB care.
- Updates from the country’s leading EB Researchers.
- Entry to the Exhibitor's area to meet with wound care manufacturers, supply distributors and patient advocacy partners
- Panel sessions and discussions with EB experts and community members
- Designated areas with day-long kids’ activities and entertainment
- Breakfast, Lunch, Dinner (see FAQ section for more details!)
- Social activities through-out the span of the conference, special guests and more!
For questions, please email email@example.com or call 212-868-1573 x104 and the debra of America staff will assist you.
Explore Past Conferences
debra of America proudly brought together over 650 attendees from the EB Community for the debra Care Conference (DCC) on July 22-25, 2018. The world’s leading Epidermolysis Bullosa experts along with individuals and families affected by EB had an unforgettable experience of 4 days of learning, sharing and fun. Academic researchers and organizations who conducted research into treatments and a cure for EB presented their latest in EB research; bandage manufacturers & distributors demonstrated their products and services; and leading medical professionals from a range of specialties shared the best practices in EB care. Most importantly, the conference allowed those impacted by EB to meet new families and reconnect with others from around the country.
The 2016 debra Care Conference (formerly PCC) was held at the Gaylord Texan Resort and Convention Center in Grapevine, TX, just outside of Dallas. This 4-day conference was a tremendous success for the families, physicians, researchers and exhibitors in attendance. A total of nearly 600 people listened to presentations and discussions on the latest in EB care, wound care products, clinical trials, and promising research towards a cure.
Thank you to all who attended the 2014 Patient Care Conference, including our speakers, sponsors, and volunteers who helped make the event possible. The 2014 conference was held at the Gaylord Opryland Resort in Nashville, TN, an all indoor, temperature-controlled hotel. In 2014, debra was able to provide assistance to 16 families to attend the PCC. For many, this was the first time they got to meet other families with Epidermolysis Bullosa.
At the 2012 PCC, we learned about EB, new trends in care, and heard the latest research initiatives and updates from top researchers and clinicians. This conference was held at the Gaylord Palms Resort & Convention Center in Orlando, FL. Children enjoyed various exciting activities in the three Kids Rooms. Our attendees reconnected with families they already knew, met new ones, and saw Facebook friends in person for the first time. The debra staff had an amazing time learning and laughing with each and every one of our attendees!
View the 2012 PCC Agenda
Watch the 2012 PCC Video
The 2010 Patient Care Conference was a collaboration between debra and the Cincinnati Children’s Hospital Medical Center EB clinic led by Dr. Richard Azizkhan and Dr. Anne W. Lucky. Without their help and cooperation, the conference would not have been such an outstanding success.
The first researcher to speak was John E. Wagner, M.D. from the University of Minnesota. Dr. Wagner and his team have been studying the use of stem cells to treat children with severe EB, RDEB and the junctional forms of EB, with significant successes. Dr. Wagner took questions from the audience who were pleased to get the information right from the source, as his research offers some hope towards a cure for EB. On Thursday, the speakers’ topics ran the gamut from Wound Care Advances, Camps and Recreation, Rare Disease Legislation, Sexual and Emotional Health, Cell based therapies for DEB and Insurance Issues. Hollister Wound Care sponsored a trip to the Newport Aquarium Thursday evening. Everyone loaded into our donated school buses (thank you to First Student, Inc. for your generosity) and headed to the Aquarium. Once they got inside the aquarium it was like they had stepped into a wonderland. It was such a wonderful experience that even the grownups were awestruck by some of the odd and beautiful creatures, the scary sand eels, the mesmerizing jelly fish, the stalking sharks and the ever-hilarious penguins. It was a long and memorable day, with one more day to go.
On Friday, the last day, many important topics were covered. Nutrition and EB, Pain Management, Genetic Counseling, G-Tubes, Dilatations and GI Issues. Everyone listened to the last of the researchers explain their different approaches. All are working towards the same end, a cure for EB.
This year’s experiment with individual consultations with the doctors was a success and we hope to expand the program in 2012. The Debra team along with Tim Brown were able to get lots of photos to do some new brochures and the Kids room was a success, with the kids making gifts for their Dads for Father’s Day. Everyone exchanged emails, phone numbers, and addresses and the last photos were taken. As Friday wound down one could feel the shift in mood as everyone started thinking about heading home. The next morning at Saturday’s continental breakfast we reflected on the previous few days and said our goodbyes to friends new and old alike.