EB is a rare inherited skin disorder characterized by extreme skin fragility, causing the skin to blister or tear easily. The UMCG has long served as a national expert center, providing diagnostics, treatment, and follow-up care for more than 500 EB patients from the Netherlands, Belgium, and Germany.
Part of the support will go toward establishing a specialized clinical research center for EB at UMCG. This center will enable researchers to conduct clinical studies safely and efficiently under the supervision of an experienced multidisciplinary team. For patients, this means faster and more secure access to investigational therapies, closer to home, and under expert care. The center will also strengthen local research capacity and infrastructure, positioning Groningen as a key hub for innovation in EB treatment and research.
The second portion of the support will enable Dr. Bolling to lead the international COSEB project (Core Outcome Sets for Epidermolysis Bullosa). COSEB aims to harmonize outcome measurement across EB studies worldwide, ensuring that data are comparable, robust, and meaningful to patients. By standardizing what is measured and reported, COSEB facilitates globally aligned research, improves data reliability, and clarifies which outcomes are most relevant to patients living with EB.
“This support not only enables us to enhance care and research for the patients in our own center, but through international collaboration, patients in other countries will also benefit from new insights generated by this process, hopefully leading to a faster and more efficient process of bringing effective therapies to patients,” said dermatologist Marieke Bolling, Head of EB part of the UMCG Center of Expertise for Blistering Diseases.
The Support is provided by DEBRA Research, an international non-profit organization dedicated to improving treatments and ultimately finding a cure for Epidermolysis Bullosa (EB). DEBRA Research collaborates worldwide with researchers, hospitals, pharmaceutical companies, and patient organizations to develop new therapies and improve the lives of people living with EB. The goal is to give people with EB faster access to better treatments and, ultimately, to create a future in which EB can be cured.
