Lut de Baere
BOKS (Belgische Organisatie voor Kinderen en volwassenen met een Stofwisselingsziekte), Belgium
Lut De Baere is the President of BOKS (umbrella organisation for metabolic diseases) and the founder, and President of FIN (Fabry International Network).
Nurse by formation, she stopped working in 1987 when her two sons were diagnosed with a metabolic disease (MMA). As of then, she has been involved in various initiatives around rare diseases.
In 1994, Lut became president of BOKS – the Belgian umbrella patient organisation for all metabolic diseases. Because there are so many different metabolic diseases and in the same time so many patients suffering from each of those, the idea was to create a national patients’ organisation for the whole group of “metabolic diseases”. And it has been a success so far.
Lut was an active stakeholder as patients representative to create the Belgian Plan for Rare Diseases. She is member of the Flemish Workgroup NBS.
Lut was the founder and first President of RaDiOrg.be, the Belgian national alliance of EURORDIS; and was one of the founders, and still board-member, of the Fabry International Network (FIN).
The international landscape and working with all different stakeholders has no secrets for her. She is happy to have been given the opportunity to work with other, very skilled people with the same interests and concerns.
When you want to contact me, don’t hesitate to mail me, email@example.com and I will contact you.
Thanks for the trust, and I love to work for MetabERN !!!