As 2024 draws to a close, DEBRA International reflects on a year of remarkable achievements and progress in its mission to support individuals and families affected by Epidermolysis Bullosa (EB). From significant awards to impactful initiatives, the organization continues to lead global efforts in awareness, education, and research.
Celebrating Excellence
This year, DEBRA International was honoured with the prestigious EURORDIS Black Pearl Members Award, recognizing its outstanding support for rare disease patients impacted by conflicts and natural disasters in 2022 and 2023. This accolade highlights the organization’s dedication to advocacy and its commitment to making a tangible difference in the lives of those it serves.
Empowering Youth
As part of strategic pillars, DEBRA International established the DEBRA International Youth Council this year, which now boasts 95 members from across the globe. The Youth Council has conducted workshops, hangouts, and coffee chats, forming a virtual community. They have also met in person, significantly contributing to various initiatives such as translating materials for the James Lind Alliance Survey and developing content for EB Awareness Week.
Global Impact Through Events
In April, DEBRA International hosted its first-ever MENA and African International EB Congress in Egypt. This was a historic moment, marking the first DEBRA International conference in these regions, with 326 attendees from 40 countries and 55 speakers participating in the three-day event. The next congress is scheduled for quarter one of 2026 in Brazil.
Additionally, travel grants totalling €21,000 were provided to 21 attendees from 17 countries to support Congress participation. Plans are underway to issue 12 more grants valued at €31,000.
This groundbreaking event marked a significant step in expanding the reach of EB advocacy and research to underserved regions.
DEBRA International actively participated in significant events like the EWMA Conference in May 2024, attended by 5,000 participants from 94 countries, and the World Congress of Risk and Diseases in June 2024. These engagements aimed to advance research, clinical trials, and quality-of-life improvements for EB patients.
Strengthening Awareness and Education
During EB Awareness Week, DI amplified its impact through 61 posts in multiple languages, yielding a significant increase in content interaction. Additionally, the Patient Engagement 101 webinar series provided valuable insights on advocacy and collaboration, further empowering patients and caregivers.
Further, clinical practice guidelines, such as the Management of Oesophageal Strictures in EB, are nearing publication.
Advancing Research
DEBRA International continued to lead transformative research efforts in 2024, in research initiatives like the James Lind Alliance Priority Settings Study and the Burden of EB study which have been instrumental in identifying community-driven priorities and understanding the socioeconomic impact of EB. Efforts also included broadening clinical trial networks, with new trial sites established in India to address recruitment challenges.
Looking Ahead
Plans for 2025 are already in motion, with initiatives like storytelling and testimonial workshops, patient expert training in partnership with UPATI, and the creation of a Community Advisory Board to enhance dialogue with key stakeholders.
DEBRA International remains committed to fostering partnerships, building capacity, and steering EB research in directions valuable to the community. With continued support from its members, stakeholders, and advocates, the organization looks forward to an impactful year ahead.
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