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NEWS
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21 hours ago
Support the WHA 2025 Resolution on Skin Diseases!
The World Health Assembly will meet in May 2025 to adopt a groundbreaking resolution to prioritize skin health as a global health issue.
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Feb 11
New RDI-Lancet Commission on Rare Diseases aims to drive global impact
Read more about the new initiative dedicated to improving the lives of Persons Living with a Rare Disease (PLWRD) globally.
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Feb 11
A landmark moment for the WHA Resolution on rare diseases
On February 4, 2025, RDI officially submitted the #Resolution4Rare for consideration by the World Health Assembly (WHA) Executive Board.
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Jan 9
President's Report 2024
As 2024 draws to a close, DEBRA International reflects on a year of remarkable achievements and progress its support to those affected by EB
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Sep 25, 2024
DIYC at the DEBRA Care Conference in Atlanta
An update on the DEBRA International Youth Council (DIYC) attendance at the DEBRA Care Conference.
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Sep 25, 2024
The European Society for Dermatological Research (ESDR) Review
ESDR was held in Lisbon at the beginning of September. DEBRA Spain represented DEBRA International and held a talk about EB.
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Sep 12, 2024
JLA study: A giant global thank you from DEBRA UK
A summary of the JLA study results, along with a big thank you from DEBRA UK for your participation.
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Sep 1, 2024
DEBRA International President Ritu Jain elected as new RDI Council Officer
Rare Diseases International announced the results of the recent RDI Council elections, with DI president Ritu Jain elected as Secretary.
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Jul 25, 2024
DEBRA International attends the 2024 EWMA Conference
DEBRA International held two sessions and a booth at the 2024 EWMA in London.
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Jul 15, 2024
Take part in new BUR-EB project to improve EB care in Europe
BUR-EB's new study aims to assess patients’ quality of life and the financial burden of EB on their families.
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Mar 6, 2024
DEBRA International Youth Council
Introducing the DEBRA International Youth Council! Find out about their mission, their vision and meet their team.
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Feb 28, 2024
DEBRA groups attend ERN Skin's Patient Education Program and Scientific Meeting
ERN Skin held a Patient Education Program and Scientific Meeting for its members. 80 participants enrolled in the two day event.
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Feb 21, 2024
DEBRA International celebrates EURORDIS 2024 Members Award win at the Black Pearl Awards
DEBRA International wins the EURORDIS 2024 Members Award at the Black Pearl Awards
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Feb 8, 2024
Was Ist EB? booklet now available to download in German
The popular booklet 'What Is EB/Was Ist EB?' is now available in it's newest translation, German, and free to download.
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Jan 31, 2024
Youth Council: To infinity and beyond
The DEBRA International Youth Council: update about what they’ve been up to and what they will focus their efforts on in 2024
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Jan 16, 2024
DEBRA International wins EURODIS member award
DI has received the EURODIS Member Award for the support of the rare disease community affected by conflicts and natural disasters.
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Dec 21, 2023
DEBRA International Roundtable of Companies first in-person group meeting
On Tuesday 12th December 2023, the DEBRA International's inaugural Roundtable of Companies held the first in-person group meeting in London.
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Dec 20, 2023
Chiesi Global Rare Diseases receives FDA approval for FILSUVEZ® topical gel for the treatment of EB
FILSUVEZ topical gel is indicated for the treatment of partial thickness wounds in patients 6 months and older with Junctional and...
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Aug 1, 2023
DEBRA International and GlobalSkin Symposium
The event gave clinical, research, and industry updates on EB, successful collaborations with DEBRA, and building impactful patient groups.
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Jun 22, 2023
Prizes awarded to DEBRA representatives at GlobalSkin Conference 2023 ELEVATE
Two DEBRA reps were recipients of the Patient Leader Awards honoring leadership of GlobalSkin members at local, regional, and global levels.
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