Take part: RHEACELL phase 3 clinical trial on systemic stem cell therapy for wound healing in RDEB/JEB
A new clinical trial is looking for 74 patients with severe forms of EB in renowned study centers across the world.
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NEWS
Jul 25
DEBRA International attends the 2024 EWMA Conference
DEBRA International held two sessions and a booth at the 2024 EWMA in London.
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.
Jun 18
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 25
DEBRA Croatia marks Rare Disease Day 2024
DEBRA Croatia marks Rare Disease Day with three new workshops for policy makers and students.
Jan 10
NEW! Neonatal Care in EB: a Clinical Practice Guideline now published
It highlights management priorities in neonatal EB care and provide clinicians access to recommended treatment and preventative care options
Dec 21, 2023
Last call to get patients involved in the GRIDD study
The online survey takes 10-20 minutes to complete and is open only until December 31, 2023.
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...
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 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.
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
Aug 21, 2023
DEBRA Spain's work in funding research, international collaboration, and EB healthcare
DEBRA Spain are delighted to announce they will be dedicating €100,000 to a research project to develop a topical gel to treat RDEB wounds.
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.
Jun 26, 2023
Celebrating two years of support in Indonesia: a recap of DEBRA Indonesia's events
The group has held several online and in-person events to cater for its EB patient and healthcare communities in the archipelagic country.
Jun 26, 2023
DEBRA South Africa takes part in Dermatology Nursing Workshop
The nurses were educated on EB and how to take care of babies' wounds with the resources available to them in their respective centres.
Jun 13, 2023
Video highlights of DEBRA Ukraine's activities supporting its members during war time
The video demonstrates the sterling work by the group to support its members and EB patient community in times of extreme adversity.
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 23, 2023
US FDA gives its first approval for new treatment for dystrophic EB
Krystal Biotech has received FDA approval for the first-ever redosable gene therapy, VYJUVEK™.
May 18, 2023
DEBRA UK completes its largest ever EB patient insight study
DEBRA UK completes EB patient insight study to better understand how EB impacts a patient's life and the type of care they receive.
May 16, 2023
EB Clinet Online Seminar: Nutritional Needs & Anemia in Adults with EB
The next EB Clinet Online Seminar is dedicated to the topic of 'Nutritional Needs and Anemia in Adults with EB'
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