Frank Vandenbroucke, the Belgian minister of Social Affairs and Public Health, visited the EB-clinic at the University Hospital of Leuven on 28th May 2024.
He first attended a presentation about the Belgian measures for rare diseases in general followed by a more specific presentation about the composition and functioning of the multidisciplinary EB-team.
During this visit, he announced that the Insurance Committee of NIHDI[i] has just approved an important agreement to ensure that patients suffering from four rare diseases can benefit from better care.
The diseases covered by the new NIHDI agreement (budget 2.3 million euros on an annual basis for 5 years) are multiple system atrophy (MSA), primary immune deficiency (PID), idiopathic pulmonary fibrosis (IPF) and epidermolysis bullosa (EB). This agreement is a kind of “pilot project” that will be reviewed after 2,5 years to assess the coherence and sustainability of the model.
The minister also had the occasion to meet several children with EB and their parents, who had been invited to the quarterly multidisciplinary EB-consultation.
The consultation is organized like a “carrousel’. The first five patients are assigned a consultation room, where members of the EB team visit in turn or together to discuss the various problems, adjust the treatment plan, write the necessary prescriptions, make appointments for home care such as wound care, physiotherapy or psychology etc. The approach is very individual and holistic.
A personalised care plan and coordination of care
The new agreement will finance a care coordinator. This care coordinator is responsible for ensuring that patients receive all the care they need by all required care providers in the clinic as well as in their home area, and for guiding them through the various stages of treatment, which are set out in an individual care plan. The aim is to improve quality of life. The coordinator's first task is to help the patient and those around him or her to make known all their needs and life goals, to ensure that care is tailored to these as closely as possible. This information is used to draw up a care package that obviously includes specialist care adapted to the pathology, but also, for example, physiotherapy, psychological or social support, coordination with school, etc. This care is provided by the multidisciplinary EB-team in the hospital, working closely with the care provided [AB1] in the patient's home.
Some background
Debra Belgium has been funding the “EB-nurse-project” in UZ Leuven for 20 years. Caroline De Reu and Wendy Godts will become the official “care coordinators” under this new agreement, respectively for children and adults. If all goes well, an approval of the application might be expected by September 2024.
Belgium announced a plan for rare diseases in 2013. One action point announced the recognition of new centre of expertise. But no budget had been allocated to this action point and Belgium has never recognized any centres of expertise for rare diseases. We do have a number of conventions for other groups of rare diseases : cystic fibrosis, neuromuscular diseases, metabolic diseases, haemophilia.
The EB centre at UZ Leuven has European recognition since 2017, as it is an accredited member of ERN-Skin for EB, with Dr Colmant as its HCP representative. As such the EB centre at UZ Leuven is published on the ERN-Skin website and on Orphanet .
EB-team:
Prof. Gunnar Naulaers, pediatrician
Dr. Caroline Colmant, dermatologist
Prof. Dr. Ellen Denayer, clinical geneticist
Dr. Veroniek Verhaeghe, dentist
Caroline De Reu, EB-nurse children
Wendy Godts, EB-nurse adults
Jill Boeykens, EB-nurse, Kites Liaison Team
Joanna Willen, psychologist
Inge Droesbeke, social worker
Indra Lens, speech therapist
Tessa Bosman, dietician
Sofie Vuylsteke, physiotherapist
… and more. Read more via the website:
[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.