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NEWS


NEW! Management of Oesophageal Strictures in Inherited EB: a Clinical Practice Guideline now published
This is an essential tool for health professionals, highlighting management priorities in the care of oesophageal strictures in inherited epidermolysis bullosa (EB) and provide clinicians access to recommended diagnostic, treatment, and preventative care options.
Jun 5, 2025


EB day at Dynamo Academy – a special gathering in Italy
Debra Italia’s EB Day at Dynamo Academy brought the EB community together for two days of connection, learning, and support in Tuscany.
May 22, 2025


DEBRA France celebrates 40 year anniversary
DEBRA France marked 40 years with families, workshops, awards, and a zoo visit, celebrating decades of support and community in the fight against EB.
May 22, 2025


Women of Egypt honor Hanaa El Sadat with Women of Impact Award
Women of Egypt recognized DEBRA Egypt founder Hanaa El Sadat with the Women of Impact Award for her life-changing work supporting children with the rare skin condition EB.
May 22, 2025


DEBRA International at the 15th World Congress of Pediatric Dermatology in Buenos Aires
DEBRA International joined the 15th WCPD in Buenos Aires to raise EB awareness, share resources, and connect with global dermatology professionals and partners.
May 21, 2025


New EB patient organisation in Bulgaria
EB DEBRA Bulgaria is new a patient-led organisation and member of DEBRA International dedicated to supporting those affected by EB through access to therapies, advocacy, and collaboration across healthcare, government, and industry.
May 21, 2025


GlobalSkin Marks 10th Anniversary with International Conference in Prague
DEBRA International joined GlobalSkin’s 10th anniversary in Prague, where 300+ advocates united under the theme “Champion” to connect and share experiences.
May 12, 2025


Yasmin El Samra Foundation honored at MENA Congress for Rare Diseases
DEBRA Egypt was proudly presented with an award-winning EB advocacy poster, and held a keynote presentation at the MENA Congress for Rare Diseases
May 1, 2025


Abeona Therapeutics Inc receives FDA approval for ZEVASKYN™ cell-based gene therapy
The FDA has approved ZEVASKYN™ (prademagene zamikeracel), the third therapy available for individuals with epidermolysis bullosa (EB)
Apr 29, 2025


New DEBRA International Zoom Backgrounds Available Now – Download for Free!
DEBRA International are pleased to share a new collection of DEBRA International Zoom backgrounds, free for all to use.
Apr 23, 2025


DEBRA International attends the 2025 EWMA Conference in Barcelona
DEBRA International, represented by DEBRA Spain, raised EB awareness and fostered global partnerships at EWMA 2025 in Barcelona through talks and collaboration.
Apr 15, 2025


A morning celebrating Ramadan with Inner Wheel Clubs
The Yasmin El Samra Foundation - DEBRA Egypt share a letter of thanks and appreciation for the Ramadan celebration, now in its 27th year
Mar 31, 2025


EMA Recommends Approval of Vyjuvek
On February 28, 2025, the EMA has recommended granting a marketing authorisation in the European Union for Vyjuvek to treat DEB.
Feb 28, 2025


DEBRA Jordan's Educational Day for Patients with EB on the Importance of Oral & Dental Healthcare
An Educational Day was organised for patients with EB and some Healthcare Specialists to highlight the importance of oral health in Jordan.
Feb 27, 2025


DEBRA Egypt celebrate Rare Disease Day 2025
On Rare Disease Day 2025, DEBRA Egypt emphasize their commitment to managing around 400 cases of EB and offering essential medical support.
Feb 27, 2025


A Butterfly Summer with DEBRA Polska
Butterfly Summer 2024 was a week-long rehabilitation and educational retreat for those affected EB in Poland and Ukraine.
Feb 27, 2025


New EB patient organization in Jordan
Butterfly Wings Organisation—DEBRA Jordan is the premier charity organisation in Jordan dedicated to supporting people with EB.
Feb 20, 2025


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 20, 2025


DIYC attend fifth DEBRA Brazil Congress
The DEBRA International Youth Council recall their visit to the fifth DEBRA Brazil Congress.
Feb 12, 2025


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, 2025


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.
Feb 11, 2025


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
Jan 9, 2025


Second meeting of DEBRA International Roundtable of Companies
On Thursday, 28th November 2024, the second annual meeting of DEBRA International's Roundtable of Companies took place in Dublin, Ireland.
Dec 16, 2024


Strengthening community and knowledge: The National Meeting by DEBRA Spain/Piel de Mariposa
DEBRA Spain/Piel de Mariposa hosted its annual National Meeting, from October 3 to 6 in Estepona (Málaga).
Dec 1, 2024
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