On December 16, 2020, Professor Bart Loeys, a pediatric cardio-geneticist from the University of Antwerp, world-renowned specialist in Marfan syndrome and related diseases (such as Loeys-Dietz syndrome), co-Chairman of the Scientific Committee of Fondation 101 Génomes and leader of the GEMS project, received from His Majesty the King the prestigious [...].
700,000 euros to finance the Ghent & Antwerp teams working on GEMS! On December 16, 2020, Professors Bart Loeys and Paul Coucke have both received more than 700,000 euros in funding from the Fonds Wetenschappelijk Onderzoek (FWO) to work in the laboratory on the F101G flagship project: the GEMS! project. This is fantastic! […]
On October 26, 2020, Fondation 101 Génomes signed a Matching Gifts agreement with a partner who wishes to finance the GEMS project with 75,000 euros over three years. This partner will therefore double all donations made to Fondation 101 Génomes for GEMS research over three years. […]
GEMS stands for Genome-wide Epistasis for cardiovascular severity in Marfan Study. The objective of GEMS is to identify protective modifier genes (= epistatic genes) within the whole human genome that can explain the variability in cardiovascular severity found in individuals with Marfan syndrome. Such a discovery would make it possible to consider [...].
We are pleased to share with you the email Alisa sent to the "impatient! "in December 2020. As a reminder, "impatient! " is the crowdfunding platform developed to support the activities of Fondation 101 Génomes. In her letter, Alisa gives an update on the progress that has been made thanks to the fantastic campaign [...]
On 28 September 2020, Romain participated in the international online summit organized by the American Marfan Foundation: "E³ Summit". The summit took place online from 25 August to 12 September 2020 and was a great success, with more than 2,810 participants from 75 countries. The various presentations were presented in [...]
In October 2020, the King Baudouin Foundation and the Dr Daniël De Coninck Fund communicated the list of eight ethical principles, the "8 Caring Technology Principles", which must be met today and in the future by technological innovations in the field of health and well-being. Prior to the official publication of these principles, the Foundation [...].
This interview was published in "Le Chaînon - la revue des associations de patients et de proches" of the LUSS, N° 52 in September 2020. Le Chaînon (LC): Ludivine, what is Marfan syndrome? Ludivine Verboogen (LV): Marfan syndrome is a rare multi-systemic disease that affects, in particular, the elderly and the [...]].
This article appeared in "Le Chaînon - la revue des associations de patients et de proches", N°52 in September 2020. The research carried out by Professor Sandy Tubeuf and Doctor Setti Rais (Louvain Institute of Data Analysis and Modeling in Economics and Statistics) on the economic stakes in the context of rare diseases is [...]
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 mobilising, in various ways, to stimulate research on rare diseases and improve patient care. The King Baudouin Foundation is home to the King Baudouin Fund for Rare Diseases.
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