| 1:00 PM - 5:00 PM |
DCC Check-in Please note: For those staying at the hotel, checking into your hotel room is handled separately through the hotel directly, with standard check-in beginning at 4:00 PM. Hotel check-in will be in the hotel lobby, while conference check-in will be on the conference floor. Exact location TBA. |
| 5:30 PM - 8:30 PM |
DCC Celebration: debra of America Gala The evening will feature passed hors d'oeuvres, dinner, silent auction, entertainment, and a presentation of community awards. Tickets to the DCC Celebration are included for all EB families registered for the conference. Additional a la carte Celebration tickets are available for purchase for those not otherwise included. Learn more |
| 7:30 AM - 9:00 AM | Breakfast, Opening Remarks & Newcomer Welcome |
| 9:00 AM - 9:45 AM | Genetics of EB Andrew South, PhD |
| 9:00 AM - 9:45 AM | Eye Care Management & EB Jamila Hiasat, MD; Elizabeth Hoffman |
| 10:00 AM - 10:45 AM | Making Sense of EB Science: Gene, Cell, and Other Strategies M. Peter Marinkovich, MD |
| 10:00 AM - 10:45 AM | Daily Wound Care: Q&A with the Experts Amy S. Paller, MD; Kellie Badger, BS, RN; Heather Fullmer, BSN, RN |
| 11:00 AM - 11:45 AM | Pain Management & EB Julie Good, MD |
| 11:00 AM - 11:45 AM | Paradigm Therapeutics (Sponsored Session) |
| 12:00 PM - 12:45 PM | Reflective Listening Jessica Collins, PsyD; Mark Popenhagen, PsyD |
| 12:00 PM - 12:45 PM | Teen Welcome |
| 12:00 PM - 12:45 PM | Krystal Biotech, Inc. (Sponsored Session) |
| 12:45 PM - 2:00 PM | Lunch |
| 2:00 PM - 2:45 PM | EB Simplex: Transforming Care and Accelerating Research to Address Unmet Needs Joyce Teng, MD, PhD |
| 2:00 PM - 2:45 PM | Abeona Therapeutics (Sponsored Session) for RDEB |
| 2:00 PM - 2:45 PM | Junctional EB Care and Research Anna L. Bruckner, MD |
| 3:00 PM - 3:45 PM | Adults with EB - Panel Discussion and Q&A on EB Management & Addressing Gaps in Care Braden Candela, MD; Dr. Emily Gorell; Neda Nikbakht, MD |
| 3:00 PM - 3:45 PM | Workshop for Parents of Young Children with EB (Infants, Toddlers, Preschool Ages) Catherine Doernbrack, NP, PNP, RN; Julie Wieser, BSN, RN; Mark Popenhagen, PsyD |
| 3:00 PM - 3:45 PM | Workshop for Parents of School-Aged Children (who are ~5 to ~13 with EB) |
| 4:00 PM - 4:45 PM | Cannabinoids: Right for You? Amy S. Paller, MD |
| 4:00 PM - 4:45 PM | Keeping Bones Strong in EB: Bone Health Anna L. Bruckner, MD |
| 4:00 PM - 4:45 PM | Siblings and EB: Finding Balance in the Family Jessica Collins, PsyD |
| 4:45 PM - 5:45 PM | Peer-Led Support Groups |
| 5:45 PM - 7:15 PM | Dinner |
| 7:00 PM - 9:00 PM | Pool Party & Family Fun Stations |
| 7:30 AM - 9:00 AM | Breakfast |
| 9:00 AM - 9:45 AM | Chronic and Non-Healing Wounds in EB Lawrence Eichenfield, MD |
| 9:00 AM - 9:45 AM | Processing the EB Experience: Medical Trauma & Healing Anne Davis, Psy.D.; Michelle Lahat, MSW, LCSW; Sarah Santiago, OTR/L |
| 10:00 AM - 10:45 AM | Hands, Feet and High Friction Areas Marissa J. Perman, MD; Judith J. Stellar, MSN, CRNP, CWOCN; Carrie Shotwell, MEd, DHS, OTR/L |
| 10:00 AM - 10:45 AM | Anemia in EB Thomas D. Coates, MD |
| 11:00 AM - 4:00 PM | Bandaging Help Desk: Ask an EB Nurse (Drop-In) |
| 11:00 AM - 11:45 AM | Oral Health for Young Children and Adolescents Patrick T. Ruck, DDS |
| 11:00 AM - 11:45 AM | Managing Gastrointestinal (GI) Challenges in Teens & Adults with EB Jacob Mark, MD |
| 11:00 AM - 11:45 AM | Pregnancy, Childbirth, and Early Care Julie Anderson, BSN, RN; Julie Wieser, BSN, RN; Elizabeth Burris, Emily Boros-Rausch |
| 12:00 PM - 12:30 PM | Chiesi Global Rare Diseases (Sponsored Session) |
| 12:00 PM - 12:45 PM | Itch & EB |
| 12:45 PM - 2:00 PM | Lunch |
| 2:00 PM - 2:30 PM | RHEACELL (Sponsored Session) |
| 2:00 PM - 2:30 PM | TWiB (Sponsored Session) for EB Simplex |
| 2:30 PM - 3:15 PM | Panel Discussion: Current Shifts in Therapy and Implications in EB Care M. Peter Marinkovich, MD; Marissa Perman, MD; Anna L. Bruckner, MD; Jean Y. Tang, MD, PhD |
| 2:30 PM - 4:00 PM | Open Forum: Physical Activity & EB Jennifer Chan, OTR/L |
| 3:15 PM - 4:00 PM | ART-EB: Advancing Repurposed Therapeutics for Epidermolysis Bullosa Su Lwin, PhD |
| 3:15 PM - 4:00 PM | Loss Across the Lifespan Anne Davis, PsyD.; Allyson Anderson |
| 4:15 PM - 5:00 PM | Palliative Care Mark Popenhagen, PsyD |
| 4:15 PM - 5:00 PM | Nutrition and EB Caitlin L. Cacioppo, MS, RD, CSP |
| 5:00 PM - 5:45 PM | EB Discovery Hall (Poster Session I) |
| 5:45 PM - 7:00 PM | Dinner |
| 7:00 PM - 9:00 PM | Community Night: Karaoke Party |
| 7:30 AM - 9:00 AM | Breakfast & EB Discover Hall (Poster Session II) |
| 9:00 AM - 9:45 AM | Oral Health for Teens and Adulthood Patrick T. Ruck, DDS |
| 9:00 AM - 9:45 AM | Managing Gastrointestinal (GI) Challenges in Children with EB Jacob Mark, MD |
| 10:00 AM - 10:45 AM | Surgery & EB: What Families Need to Know Before, During & After Rachel Miller, BSN, RN |
| 10:00 AM - 10:45 AM | Squamous Cell Carcinoma (SCC) in EB Braden Candela, MD; Neda Nikbakht, MD |
| 11:00 AM - 11:45 AM | Making Epidermolysis Bullosa Count: Insights from Real-World Health Data from the UK Zoe Venables, MD |
| 11:00 AM - 12:45 PM | Building Relationships (11:00 AM - 11:45 AM) Sarah Santiago, OTR/L; Erika Slifer, PsyD Intimacy Matters: Sexual Health (12:00 PM - 12:45 PM) Alex King, OTR/L, Kellie Badger, RN, Michelle Lahat, MSW, LCSW; Elizabeth Burris |
|
11:00 AM - 12:45 PM |
Navigating Schools and School Systems (11:00 AM - 11:45 AM) Catherine Doernbrack, NP, PNP, Alex King, OTR/L Camp Experiences: Guide for Parents (12:00 PM - 12:45 PM) |
| 12:45 PM - 2:00 PM | Lunch |
| 2:00 PM - 2:45 PM | Workshops by Life Stages/Age: TBA |
| 3:00 PM - 4:15 PM |
Workshops by Life Stages/Age: TBA |
| 3:00 PM - 4:15 PM |
Workshops by Life Stages/Age: TBA |
| 4:30 PM - 5:30 PM | Gov't Advocacy Updates + Closing Remarks Brett Kopelan, Executive Director, debra of America |
| 5:30 PM - 7:00 PM | Dinner |
This agenda is preliminary, and session titles, speakers, and timeslots are subject to change. Additional sessions and speakers will be added in the coming weeks.
Evening Socials
Learn more about the evening gatherings that we have planned this year! These special events are designed for attendees to relax, connect, and spend time with others in the EB Community.
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Register for the DCC
Registration is open! Secure your spot at the world's largest gathering of the Epidermolysis Bullosa (EB) Community, happening July 26-29 (with hotel stays through July 30) in Los Angeles, CA!
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FAQs
Visit our FAQ page for detailed information about the debra Care Conference (DCC) and what to expect.
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