On Thursday, 28th November 2024, the second meeting of the DEBRA International Roundtable of Companies (DIRC) took place in Dublin, Ireland. The event brought together 37 attendees, both in-person and online, from 16 countries and representing 27 organizations, making it another highly successful gathering.
The meeting was a hub of collaboration, innovation, and discussion focused on advancing care, research, and awareness for Epidermolysis Bullosa (EB).
Key Highlights from the Meeting
Strategic Initiatives and Projects
Participants reviewed several major initiatives, that DEBRA International leads/is involved in, including:
The Black Pearl Members Award 2024: Recognizing exceptional contributions to the EB community.
EB Awareness Week 2024: Plans for raising global awareness.
Youth Council & Patient Education: Empowering the next generation and enhancing patient knowledge through webinars and clinical guidelines.
BUR-EB Study: A socioeconomic impact study to inform equitable care and rare disease policies.
Research Updates
Ongoing research projects presented included:
PEBLES: Establishing tools and data for regulatory approval.
COSEB: Harmonizing EB outcome measures for streamlined clinical trials and global implementation.
BUR-EB: Highlighting EB’s socioeconomic burden to shape policy and improve care access.
URGO QoL Study: Evaluating quality-of-life metrics to better understand the day-to-day impact of EB.
DEBRA Research: Launching a self-sustaining R&D organization to support breakthroughs in EB treatment.
Challenges and Opportunities
Key discussions in breakout sessions addressed:
Overcoming barriers in clinical trial recruitment.
Building patient-centric registries to enhance research and therapy development.
Incentivizing clinical centers to participate in EB studies.
Expanding genetic diagnosis through telemedicine and AI.
Developing EB-specific training for clinical trial centers.
Strengthening global collaboration among DEBRA and EB organizations.
Looking ahead to 2025
Plans for the coming year include workshops on storytelling and patient advocacy, a training series for patient experts, and establishing a Community Advisory Board (CAB) to strengthen community engagement.
The meeting reinforced DEBRA International’s commitment to fostering global partnerships and driving progress in EB care and research. It also underscored the importance of collaboration and innovation to address the complex challenges faced by the EB community.
A special thank you to URGO Medical, Chiesi Global Rare Diseases and Krystal Biotech for being DIRC members, and the contribution and commitment to DEBRA International and EB. Thank you to all of the attendees for their time and contributions which made it such a success. DEBRA International looks forward to hosting more Roundtable of Companies meetings in the future and continuing to drive progress and change for the EB community.
The DEBRA International Roundtable of Companies (DIRC) is DEBRA International’s primary means of engaging and building long-term partnerships with companies that have an impact on the lives of people with EB.
By joining the DIRC, companies support the global mission of DEBRA International and build a relationship wherein DEBRA International learns from corporate partners and vice-versa by participating in interactive meetings. Find out more here.
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