Join us this July 28-31 in Atlanta, GA for an immersive experience where we explore key themes:
- Building Blocks of EB Care: Foundational Insights and Integrative Approaches
- Managing EB: Targeted Care Approaches and Strategies
- Fundamental Breakthroughs: Advancements in EB Research and Treatments
- Empowering the EB Community: Progress, Challenges, and Advocacy
- Meet-Ups by Ages and EB Type
The 2024 DCC planning is underway and the agenda is being finalized. Topics are subject to change. For any inquiries related to the program, please email DCC@debra.org.
Topics
Aging with EB
AI: Pioneering EB Drug Development, Disease Detection, and Care for Families
Anemia
Cannabinoid Use Study Results and Update
Clinical Strategies for Pain & Itch Management + Anesthesia Management
Coping with Child's Chronic Illness (for Parents of Young Children)
Crafting Career/Passion: Personal Stories and Insights for Inspiration
Dental Care
Dupilumab for Itch: Clinical Trial Update (for all types of EB)
EB Simplex: Advancements in Therapy
EB Simplex: Insights into Clinical Care and Unique Challenges
Emergency Care Management
Emerging Therapies for EB: Understanding What They Do and What They Can Offer to Patients
Eye Care
Family Planning: Exploring Options for Growing Your Family
Financial Independence - Managing Finance and Planning Ahead
Fostering Family Strength: Techniques for Cultivating Well-Being
GI Care
Government Advocacy
Grief Support
Interdisciplinary and Preventive Care
JEB: Research Avenues and Updates
Let's Talk Mental Health, for Adults with EB
Managing Foot Wounds and Protecting the Feet
Managing Pediatric Anxiety: Strategies for Before, During, and After Medical Visits
Medical Interactions: Strategies to deal with/effectively communicate with Medical Professionals
Natural History of EB Wounds
Navigating Insurance/Disability/Employment
Navigating School Systems (Elementary-High School)
Navigating the Impact of Epidermolysis Bullosa on Caregivers and Building Resilience
Nutrition + Vitamin C Study/Outcomes
Occupational Therapy Insights & Personal Experiences
Pain Management - Everyday Strategies
Palliative Care
Peer-to-Peer: Meetups by Age and EB Type
Peer-to-Peer: Family Members of EB Angels
Peer-to-Peer: Siblings Talk
Peer-to-Peer: Transition Talks: A Supportive Discussion Forum
Prevention, Identification, and Treatment of Infections in EB
Relationships and Sexual Health
Sponsor Session: Krystal Biotech Update: FDA Approved Treatment for DEB
Sponsor Session: Chiesi Global Rare Diseases Update: FDA Approved Treatment for DEB and JEB
Sponsor Session: Abeona Therapeutics Research Update
Sponsor Session: Paradigm Therapeutics Research Update
Sponsor Session: Aegle Therapeutics Research Update
Squamous Cell Carcinoma and EB
Stigmatization and Mental Health Impact of Chronic Pediatric Skin Disorders: Study Outcomes and New Pyscho-Social Survey
Taking Control: Building Foundations for Success Through Life's Transitions
Transitioning from Pediatric to Adult Care: Insights from Clinical Practice and Research
Understanding the Genetics of EB
Unique Challenges and Strategies for Living with Unseen Wounds/Unacknowledged EB
Venture Philanthropy: When it works and when it doesn't work
Women with EB: Navigating Family Planning and Pregnancy
Worth the Leap? Understanding Clinical Trials and Making Informed Decisions
Wound Care Best Practices Across EB Subtypes
...and more!
