This article appeared in “Le Chaînon – la revue des associations de patients et de proches”, N°52 in September 2020.

For many years, the King Baudouin Foundation has been working in a variety of ways to stimulate research into rare diseases and improve patient care.

The King Baudouin Foundation is home to 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 also set up the Generet Fund, which “boosts” research by awarding an annual prize of one million euros to pioneering research into rare diseases at a Belgian university.

The Foundation also hosts the Fonds Alphonse & Jean Forton for cystic fibrosis research, which since 1997 has supported no fewer than 53 research projects for a total of 8 million euros. This fund has given a major boost to cystic fibrosis research in Belgium.

In recent years, the King Baudouin Foundation has set up several funds to support research into specific rare diseases. The initiators of these funds are often confronted with these diseases themselves, either personally or in their immediate environment. Examples include the Vlinderkindje Fund, which promotes research into epidermolysis bullosa simplica, and the Mind the  Gap ! pilot project, which promotes priority research topics in the fight against tuberous sclerosis.

Last but not least, the King Baudouin Foundation, which also hosts the 101 Genomes Fund, has clearly understood the importance of developing genomic research to combat rare diseases, while at the same time taking into account the societal challenges associated with genomic sequencing. Indeed, at the request of the Federal Minister of Health, the King Baudouin Foundation recently led a wide-ranging citizen debate on the use of the genome in healthcare (‘My DNA, are we all concerned ?’), with the aim of helping to define a genomics policy for the future in Belgium.

Bénédicte GOMBAULT, King Baudouin Foundation and Romain ALDERWEIRELDT, 101 Genomes Foundation

For more information : https://www.kbs-frb.be/