top of page

NEWS

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.

Feb 12
DIYC attend fifth DEBRA Brazil Congress
The DEBRA International Youth Council recall their visit to the fifth DEBRA Brazil Congress.

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.

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.


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.


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.


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.


Jun 18, 2024
Belgian Minister visits the EB-clinic at the University Hospital of Leuven
During the visit, Belgian Minister made an important announcement for better care for patients suffering with four types of rare diseases.

Mar 6, 2024
DEBRA International Youth Council
Introducing the DEBRA International Youth Council! Find out about their mission, their vision and meet their team.


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.


Feb 28, 2024
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.


Jan 31, 2024
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.


Dec 20, 2023
DEBRA UK's grant call for 2024
UK and international applications are invited from 1st February – 31st March 2024 for DEBRA UK project grant and small grant award...


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


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.


Jun 22, 2023
DEBRA International attends GlobalSkin Conference 2023 ELEVATE
It proved a wonderful opportunity for various DEBRA/EB delegates to connect, strategise, and discuss priorities for their communities.


May 31, 2023
DEBRA Spain works to ensure families receive the best possible level of care
From appealing for greater healthcare professional presence and attending the paediatric palliative care conference to 31 family visits.


May 3, 2023
ERN Skin meeting held in Paris attended by DEBRA representatives from Ireland, Croatia, and Belgium
ERN Skin meeting held in Paris attended by DEBRA representatives from Ireland, Croatia, and Belgium
bottom of page