This article appeared in "Le Chaînon - la revue des associations de patients et de proches", N°52 in September 2020.
For years, the King Baudouin Foundation has been working in various ways to stimulate research on rare diseases and improve patient care.
The King Baudouin Foundation thus hosts the Rare Diseases and Orphan Drugs Fund, which brings together many people involved in the fight against rare diseases. This fund laid the foundations for the Belgian Plan for Rare Diseases.
The King Baudouin Foundation has also set up the Generet Fund which, in order to "boost" research, annually awards a prize of one million euros to pioneering research on rare diseases in a Belgian university.
The Foundation also hosts the Alphonse & Jean Forton Fund for cystic fibrosis research, which since 1997 has supported no less than 53 research projects for a total amount of 8 million euros. This Fund has thus given a serious boost to cystic fibrosis research in Belgium.
In recent years, several Funds to support research on specific rare diseases have been created within the King Baudouin Foundation. The initiators of these Funds are often confronted with these diseases themselves, either personally or in their immediate environment. For example, the Vlinderkindje Fund which promotes research against simple epidermolysis bullosa and the establishment of the pilot project Mind the Gap! to promote priority research themes to fight against tuberous sclerosis of Bourneville.
Finally, the King Baudouin Foundation, which also hosts the 101 Genomes Fund, has clearly understood the importance of developing genomic research to fight against rare diseases and of taking into account the societal issues linked to genome sequencing in parallel. The King Baudouin Foundation has moreover recently conducted, at the request of the Federal Minister of Health, a broad public debate on the use of the genome in healthcare (' ).My DNA, all concerned?') intended to help define a genomic policy for the future in Belgium.
Bénédicte GOMBAULT, King Baudouin and Romain ALDERWEIRELDT Foundation, Fondation 101 Génomes
To find out more: https://www.kbs-frb.be/