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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NEWS
Sep 25
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.
Jul 15
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.
Mar 25
DEBRA Croatia marks Rare Disease Day 2024
DEBRA Croatia marks Rare Disease Day with three new workshops for policy makers and students.
Mar 6
DEBRA International Youth Council
Introducing the DEBRA International Youth Council! Find out about their mission, their vision and meet their team.
Feb 28
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.
Feb 28
Successful DEBRA Piel de Mariposa campaign for a new EB nurse
DEBRA Piel de Mariposa campaign for new nurse successfully raised €26,004.
Feb 28
Debra Brasil 2023 Congress
The 4th Debra Brasil Congress held in Belo Horizonte marked a significant milestone in the awareness and research of Epidermolysis Bullosa.
Feb 8
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.
Jan 31
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
Jan 31
DEBRA groups hold COSEB workshop: working towards harmonization of outcomes in EB
The COSEB workshop was held by the COSEB Steering committee and DEBRA research managers of Austria, France, Ireland, Spain, and the UK.
Jan 16
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.
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.
Dec 18, 2023
DEBRA France holds 4th annual EB professionals meeting in Paris
The DEBRA France Association organized its 4th annual meeting of epidermolysis bullosa professionals at the Necker Hospital in Paris.
Dec 18, 2023
DEBRA UK goes to Scottish Parliament
DEBRA UK held a reception with Scottish Parliament as the latest step in their campaign to raise awareness & the need for government support
Dec 15, 2023
New international research projects from DEBRA Austria and EB Resnet
Contracts for two new research projects have been successfully issued by EB Resnet 2022.
Dec 14, 2023
New EB patient organization in Bulgaria
Association Epidermolysis Bullosa is a new Bulgarian patient organization, created in July 2023 by patients and parents of EB children
Aug 22, 2023
DEBRA Colombia's 29th Patient Gathering Event
The DEBRA Colombia Foundation held a note-worthy Patient Gathering Event in Bogota from May 5th to 7th for patients with EB
Aug 21, 2023
Building smiles and empowering Butterfly Children- research and webinar on oral health and QoL
DEBRA Indonesia hosted a free webinar to increase awareness and knowledge of oral and dental health for EB patients
Jul 14, 2023
LifeArc and DEBRA Austria launch £2.5m funding call for repurposing therapies for EB
This Special call will seek innovative proposals to develop therapeutics for severe unmet needs that can be brought rapidly to EB patients.
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