On March 31, 2023, Ludivine was invited by Professor Michel Goldman to explain the work of 101 Génomes at the conference "Patient Access to Innovation: Learning from Rare diseases". The symposium was organized at the Palais des Académies by the Institute for Interdisciplinary Innovation in Healthcare (I³h), the Fondation Médicaments et Société [...].
The F101G was assisted by three computer scientists to develop three new Apps to facilitate research in the field of rare diseases (GEMS pilot project) and to make the results of a bioinformatics tool using artificial intelligence (GEMVAP) available to the general public. This successful collaboration was organised by mic.brussels (Microsoft/Region of Brussels) and the [...].
Since 2019, Fondation 101 Génomes has been participating in the Genome4Brussels project co-financed by the Brussels region (Innoviris). This project brings together the Foundation and three organisations specialised in bioinformatics, genetics and algorithms: the Interuniversity Institute of Bioinformatics Brussels (IB)², the ULB Center of Human Genetic (CHG) and the ULB Machine Learning Group (MLG). This consortium has set up [...]
Since 2019, Fondation 101 génomes has had the privilege of working with three organisations specialised in bioinformatics, genetics and algorithms (IB², CHG and MLG) on the Genomes4Brussels project co-financed by the Brussels region (Innoviris). Genome4Brussels aims to create an ecosystem to optimise the development of bioinformatics tools for genome analysis and to facilitate the transfer of these tools to [...]
From 22 to 29 November 2021: 20% of your online purchases on filigranes.be with the promo code "101 GENOMES" will be donated to Fondation 101 Génomes! As part of this action, we have asked the main people involved in the Fondation 101 Génomes adventure to recommend a book. Here are their suggestions: 1. Prof. Guillaume Smits (ERASME) [...]
On 29 November 2021 from 8 to 11 pm, Marc Filipson will open the doors of Filigranes at Fondation 101 Génomes (F101G) in the presence of Philippe Geluck, Fred Jannin, Gilles Dal and many other authors. During this evening, 20% of the amount of the purchases as well as the totality of the receipts of the bar will be donated [...]
On 10 November 2021, RaDiOrg, the Belgian rare disease alliance, honoured individuals and organisations active in the field of rare diseases with the Edelweiss Awards. The Edelweiss Award ceremony is an important day that highlights the exceptional work that many people do behind the scenes and in the field of rare diseases.
For four months, the Fondation 101 Génomes (F101G) benefited from the help of three young computer scientists who came to develop a new concept as part of an internship organised by the mic.brussels (My innovation center.Brussels). The mic.brussels collaborates with the Brussels computer schools from which it selects the best profiles each year to take part in its training programme.
This interview was published in "Le Chaînon - the magazine of patient and family associations" of the LUSS, N° 52 in September 2020. Le Chaînon (LC) : Romain, with Ludivine Verboogen you created Fondation 101 Génomes (F101G) which aims to promote genomic research in the field of cancer.
With the 'I'm not a unicorn' campaign, RaDiOrg reminds us that, even though they are often invisible, rare disease patients really do exist...unlike unicorns. This national campaign is being carried out for the first time for the benefit of the 8 Belgian rare disease hospitals. Find out what is at stake, what are its objectives and how the campaign will be implemented.
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 [...].
At the origin of Fondation 101 Génomes, there is the birth of Aurélien, who suffers from a rare form of a rare disease. Since Aurélien's birth and the announcement of his diagnosis, we have already come a long way together. Along the way, we have come across other children with Marfan syndrome and their families. […]
Fondation 101 Génomes is now a philanthropic organization recognized by Facebook! As a first consequence, the F101G's Facebook page now includes a new button that allows you to make donations via Facebook in just a few clicks! Second consequence, you can now organize your own fundraising campaigns to benefit F101G.
Dear all, We are leaving behind a particularly bleak year 2020 to start a year 2021 full of promises, especially for the 101 Genomes Foundation (F101G) and the fight against Marfan syndrome since: The co-president of the scientific committee of the F101G, Professor Bart Loeys, was recently honoured with the Belgian "Nobel Prize", the Nobel Prize for [...]
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 [...].
In collaboration with Microsoft, the MIC "My Innovation Center" in Brussels has decided to help Fondation 101 Génomes to progress in the implementation of its hosting and sharing solution for genomic data by providing three computer scientists during the first half of 2021... ... and a fantastic family is putting at our disposal a [...].
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.
On April 25, 2019, the Fonds Baillet Latour awarded its credit for medical research 2019 of a total amount of 750,000 euros to Professor Julie de backer (University of Ghent and co-Chair of the Scientific Committee of the project 101 genomes Marfan) and its Prix de la Health 2019 in the amount of 250,000 euros to the Professor [...]
DEN-I, the Luxembourg Marfan Syndrome Association, organised its annual scientific day in Luxembourg on Saturday 23 March 2019. The ABSM was invited to participate in this day during which the 101 Genomes Project dedicated to Marfan syndrome was presented to the patients members of the Luxembourgish association as well as to the medical staff who are working on the project.
On 15 March 2019, the 19th annual meeting of the Belgian Society of Human Genetics (BeSHG) took place at the Palais des Congrès in Liège. Romain was invited to close this annual meeting by presenting to all geneticists in Belgium the work of the Fondation 101 Génomes in general and the 101 Genomes Project in particular.
On March 14th, more than 130 spectators attended the Tartine à Lasne, a theatrical improvisation show by the Motamo company organised to benefit the F101G. Vincent Verboogen, Ludivine's brother, organized a theatrical improvisation show to benefit Fondation 101 Génomes. This show was given in Lasne (France) and [...]
On 22 February 2019, the third meeting of the Scientific Committee of the 101 Genome Project on Marfan Syndrome took place at the premises of Bank Delen in Brussels. During this meeting, the scientists agreed on the phenotypic criteria to be collected and discussed a proposal for algorithmic assistance in the collection of genomes for Marfan syndrome.
On 20 February 2019 the Global Commission's duplex launch by Eurordis, Microsoft and Takeda took place jointly in Brussels and New York. The Global Commission aims to shorten the diagnostic odyssey of rare disease patients. Romain was invited at this event to talk about the odyssey that has [...]
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...
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