It is with pleasure that my wife and I responded to Véronique Vrinds' invitation to prepare a special issue of the newspaper "Le Coeur & la Main" dedicated to the "101 Marfan Genomes Project" (hereafter P101GM) of the " Fondation 101 Génomes " (hereafter F101G). P101GM is the result of the ABSM's action and it would certainly not exist in [...].
1. can you introduce yourself? My name is Ludivine Verboogen, I founded the F101G with my husband Romain Alderweireldt and I am the mother of Aurélien who is suffering from Marfan syndrome. 2. can you explain to us what is the project 101 genomes Marfan? The P101GM consists in setting up a bio-informatics platform [...]
1. can you introduce yourself? My name is Guillaume Jondeau, I am a cardiologist at the Bichat hospital in Paris. I am responsible for the national reference centre for Marfan syndrome and related diseases which is held at the Bichat hospital also, of the French sector of rare vascular diseases and of the European sector which is called [...]
1. could you introduce yourself? I am Dr. Guillaume Smits, geneticist, with a long training in laboratory and research. Lately, I worked for eight years at the Huderf children's Hospital Queen Fabiola as a pediatric geneticist where I had the opportunity to meet Mr and Mrs Alderweireldt-Verboogen who created the Fondation 101 Génomes . 2. [...]
1. can you introduce yourself? I'm Bart Loeys. I am a clinical geneticist at the Centre for medical genetics at the University of Antwerp. I have been doing research in the field of Marfan syndrome and related diseases for many years. 2. can you explain the project 101 genomes Marfan? The syndrome [...]
1. can you introduce yourself? I'm Catherine Boileau. I am a geneticist and I run the Department of Genetics at the Bichat hospital in Paris. 2. can you explain to us what is the project 101 genomes Marfan? The P101GM consists in achieving, for the first time, in a selected number from 101 patients [...]
1. can you introduce yourself? I'm Julie de backer. I am a cardiologist and clinical geneticist at the Ghent University Hospital. 2. can you explain to us what is the project 101 genomes Marfan? The P101GM is intended to correlate clinical and genetic damage in Marfan syndrome in [...]
Can you introduce yourself? My name is Michel Verboogen, I am the President of F101G and I am also Aurélien's grandfather. In life, I'm a doctor specialising in psychiatry. 2. Can you explain to us what the Marfan Genome 101 Project is all about? P101GM is a project that consists of comparing data [...]
1. can you introduce yourself? My name is Paul Coucke . I am a professor at the University of Ghent in the Department of medical genetics where I am responsible for the connective tissue laboratory. I supervise Diagnostics in laboratories, i.e. samples sent to us for diagnostic reasons, and I also supervise research in [...]
1. Can you introduce yourself? My name is Bruno Fonteyn. I'm active in health law. I'm mainly involved in monitoring clinical research, biobanks and that sort of thing. I've been working as a lawyer for about ten years now, and a few years before that I was a member of the National Council of the Medical Association. […]
1. Can you introduce yourself? My name is Aline Verstraeten. I am a postdoctoral researcher at the University of Antwerp. I first did a PhD on Parkinson's disease, then I moved on to research on pathologies of the aorta. My focus is on the search for new genes for syndromic thoracic aortic aneurysm and on the development of new genes for the aortic aneurysm of the thoracic aorta.
1. could you introduce yourself? My name is Cécile Chabot. I have Marfan syndrome. I participated in the activities of ABSM, I founded this association with other directors. I am particularly interested in F101G for the hope that it gives us in terms of fundamental research. 2. Why do you support the project 101 genomes Marfan [...]
1. Can you introduce yourself? My name is Stéphanie Delaunay, I am president of the French Association Marfans. 2. Why do you support the Marfan Genome 101 Project at Fondation 101 Génomes ? The French association Marfans has decided to support this project from the beginning because it is an ambitious project that will allow researchers and scientists working on the Marfan Genome 101 to [...]
1. Can you introduce yourself? I am Patricia Lanssiers and I work at the King Baudouin Foundation. 2. Why do you support the Marfan Genome 101 Project at Fondation 101 Génomes ? The King Baudouin Foundation is a public utility foundation serving the general interest that works on different areas, for example, a poverty area, a [...]
1. can you introduce yourself? My name is Michael Lognoul. I am a researcher at the Research Centre for information, law and societies at the Faculty of law of the University of Namur. I started a PhD recently and I am an Assistant in topics that deal with information law, computer science and the Internet. 2. Why do you support [...]
Rare genetic diseases, such as Marfan's syndrome, have long been a neglected field of medicine. Because of their rarity, the knowledge and interest of the medical profession are often inadequate, so that many patients go through a long period of research to obtain an accurate diagnosis, a follow-up and [...]
The projects of the Fondation 101 Génomes are not trivial. A genome that decodes itself, the evils that are called, the diseases that define themselves, the treatments that develop... And then patients, relatives, scientists, doctors, or even philanthropists dialoguing around the same table, animated by hopes, goals, [...]
Brussels - Romain and Ludivine, parents of a child suffering from a rare disease, Marfan Syndrome, have set up a Foundation under the aegis of the King Baudouin Foundation, Fondation 101 Génomes, to finance the creation of a computerised platform for collection and genomic analysis. This innovative bioinformatics tool will be used by researchers in the field of genomics and [...]
Genetic diseases are not invincible Every day, the scientific community is discovering new approaches to combat congenital diseases. A Belgian initiative is being set up to develop an innovative approach that will make a major contribution to this goal. Until recently, people suffering from a genetic disease could not do much more than they could do [...].
Our history Our son Sam was born on September 24, 2017. He has Neonatal Marfan Syndrome, a severe variant of Marfan Syndrome. Marfan Syndrome is a progressive disorder in which the connective tissue in the body is not produced properly. This mainly affects the heart, lungs, skeleton and [...]
President of the ABSM As President of the Belgian Marfan Syndrome Association (ABSM), I feel it is essential to support the 101 Genomes Project of Fondation 101 Génomes. It is an innovative project that will allow us to better understand the disease and thus to better control it. This better understanding gives a lot of hope for the future of Marfan Syndrome.
1. Can you introduce yourself? My name is Lauriane Janssen. I have Marfan Syndrome and since 2017 I am the President of the Marfan Europe Network. I have been active for almost 10 years with the Belgian Marfan Syndrome Association as a scientific contact for Marfan Syndrome sufferers in Belgium.
Why do you support the 101 Marfan Genomes Project? My name is Dessie Lividikou and I'm Sam's mom. When he was born on September 24, 2017, we learned that Sam had Neonatal Marfan Syndrome. A severe progressive connective tissue dysfunction. Doctors told us that most children...
1. Can you introduce yourself? My name is Anne De Paepe, I'm a professor of human genetics at the University of Ghent and head of the department of medical genetics in Ghent, where I've set up a research unit and a clinical service specialising in connective tissue diseases, including [...].
1. Can you introduce yourself? My name is Gerrit Rauws. I'm Director of the Health Programme at the King Baudouin Foundation. We help philanthropists achieve their goals and projects for the common good. In addition, we also develop projects to improve health care and the quality of life of the people who live in the area...
Dear All, a huge thank you for your participation of yesterday in the 10k of Uccle with the F101G! It was a great first for us and you made it a success: it was a memorable day full of joy to live, energy and pleasure to be together. It feels good! Running with us, you have contributed to [...]