UZ Leuven is officially becoming the reference hospital for coordinating care for all people with Epidermolysis Bullosa (EB) in Belgium
- DEBRA International
- Jul 3
- 2 min read
After years of consultation, waiting and hoping – from the Rare Diseases Plan in 2013 to the generic convention in 2024 – the time has finally come: the NIHDI[i] and UZ Leuven [ii] have signed a convention that gives the EB team the resources to take on care coordination.
Thanks to this recognition, the team now has the budget to:
Develop a tailor-made care plan for each patient with EB
Coordinate and harmonise all multidisciplinary care, together with general practitioners, specialists, nurses, therapists, social workers and others
A well-deserved recognition for the exceptional work of this top team!
A milestone with deep roots
When Debra Belgium vzw was founded in 1999, one of our big dreams was to establish an EB centre. In those early years, a few dedicated nurses in the neonatology department at UZ Leuven, led by paediatrician Prof. Gunnar Naulaers, built up their expertise in caring for babies with EB. Their knowledge grew along with the children.
In 2002, dermatologist Dr Marianne Morren helped set up the first multidisciplinary consultations, which have since taken place four days a year for children and adults with EB.
Two years later, in 2004, a first cooperation agreement was signed between Debra Belgium and UZ Leuven to finance an EB nurse. This later developed into structural support for part of the salary costs of a nurse for children, a nurse for adults and a psychologist.
With this new agreement, we are taking a major step forward in the care of people with EB.
Sincere and heartfelt thanks to everyone who has worked so hard over the years to make this possible – from the healthcare providers to our partners and, of course, all the patients and families who have made their voices heard. Together, we will continue to build a better future!
More info on UZ Leuven website (in Dutch only):
[i] The National Institute for Health and Disability Insurance (NIHDI) is a federal public body of social security in Belgium. Under the authority of the Belgian federal minister of Social Affairs and Public Health, it is responsible for administering the country's compulsory national schemes for health insurance and disability benefits, and manages a compensation fund for medical accidents.
[ii] UZ Leuven is the University Hospital of Leuven. UZ Leuven is one of the 8 Belgian “Rare Diseases Functions”. Their mission is to coordinate, with teams with the required expertise, the care pathways and scientific research and training projects of all the professionals involved in providing an adapted and constantly evolving care.
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