President
Lut De Baere
I was born in 1961, Belgium.
I’m married and have two sons with a metabolic disease.
I’m the newest member of the FIN board (2009), but I was one of the founding members of FIN in Geneva 2005.
The international landscape and working with all different stakeholders has no secrets for me. It’s very exciting to have been given the opportunity to work with the other, very skilled board members of FIN.
I’m convinced that with a positive and constructive way of thinking and working, we can move many things for the best of all Fabry Patients.
I have no familymember diagnosed with FD, but I think I can be a surplus for the board, because I know what’s also happening within other diseases.
I’m the president, since 1994, of the Belgian patientorganisation for all metabolic diseases. Belgium is such a small country where it should be a waste of time, ernergy and money, if every metabolic disease should have their own association. There are not enough patients who suffers of each metabolic disease.
I’m also the patient representative by the Foundation of rare diseases and OD’s. With this group of people, we are working to prepare the National Plan for rare diseases in Belgium.
The Belgian alliance of Eurordis, http://www.radiorg.be/ has as president .. me. So, I think I may say I’ve got experience in this matter.
Together with the other FIN board members, we want to optimizing the quality of life for the Fabry-patients and their families.
When you want to contact me, don’t hesitate to email me, and I will contact you, asap. Thanks for the trust, and I love to work for FIN!
| Subject | User | Views | Replies | Rating | Date |
