Expert group highlights urgent need for specialist rare disease centres
Belgium still has no reference centres for rare diseases, even though there has been a plan to create one since 2013. A group of university hospitals, doctors and patient organisations are organising a debate in the federal parliament on Thursday to put the issue back on the agenda.
In 2013, the Rare Diseases Plan was proposed by then Health minister Laurette Onkelinx of francophone socialist party PS. One of the proposals was to establish reference centres for rare diseases, but the idea was not put into practice. Leuven’s university hospital attributes this to a lack of clarity about competences and the competitive atmosphere between hospitals.
However, reference centres are urgently needed, the hospital argues, because patients lose too much time before finding the right specialist. The expert group wants to set up 100 centres of expertise and networks, grouping together 7,000 rare diseases.
An umbrella national body is first needed, which can judge the self-assessment, documentation and audits of university hospitals based on European guidelines.
The time taken to get a diagnosis for a rare disease in Belgium is 4.9 years on average but often exceeds 10 years. There are more than half a million people in Belgium with a rare disease. A disease is considered rare if it affects less than one in 2,000 people in the EU.
A laboratory at the Takeda plasma-based therapies site, a biotech company in Lessines specialising in treating rare diseases © BELGA PHOTO LAURIE DIEFFEMBACQ
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