This article was published in n°61 of the quarterly newspaper "Le Coeur et la main" of the Belgian Association of Marfan Syndrome asbl. Lauriane Janssen died on 21 November at the age of 33. Lauriane was a brilliant Belgian researcher who was pursuing her career at the University of Oulu in Finland. Lauriane was suffering from [...]
Lauriane Janssen died last night at the age of 33. Lauriane was a brilliant Belgian researcher who was pursuing her career at the University of Oulu in Finland. Lauriane was suffering from Marfan syndrome and was on the front line of the fight against this disease. She worked for the newspaper "Le Coeur [...].
During the day of June 17, 2019, a post dedicated to the application of AI in the context of rare diseases was broadcast several times on the radio station "La Première". This post cites the action of Fondation 101 Génomes as an example. You will find the transcript below and you can listen to it by following this link. […]
Dear supporters, We are delighted to invite you to the Lyric Concert that will take place on Saturday, October 19, 2019 at 7:30 p.m. rue des Jambes, 15 à 1420 Braine-l'Alleud (Parking: Q-Park, Rue Fortemps at 1420 Braine-l'Alleud). This concert is organized by the director of the Aurélien school, Mrs Hélène Nabokoff and her husband, Mr Alexis Greindl. […]
Mrs Ludivine VERBOOGEN and Mr Romain ALDERWEIRELDT, founders of F101G, explain the common objective of the ABSM and F101G to win 10 years of research dedicated to Marfan Syndrome during the Gala of the 20th anniversary of the Belgian Association of Marfan Syndrome (ABSM) which took place on October 5th, 2019.
ABSM 20th anniversary gala (Part 1/2) (Photo credits: Christophe Danaux | www.birdy.photo | birdy@christophedanaux.be | birdy@christophedanaux.be) ABSM 20th anniversary gala (Part 2/2) (Photo credits: Fabien Chevigne | fabien_chevigne@hotmail.fr)
Professor Guillaume SMITS, Université Libre de Bruxelles, member of the scientific committee of the 101 Marfan Genomes Project, explains the tool "GEne specific Missense VAriant Predictor (GEMVAP)" developed thanks to the F101G and the role of artificial intelligence in the diagnosis of Marfan syndrome during the Gala of the 20 years of the Belgian Association of Marfan Syndrome [...].
Professor Bart LOEYS, University of Antwerp & Co-Chairman of the Scientific Committee of the 101 Genomes Marfan Project, presents the state of research initiated by the F101G: Genome-wide Epistasis for cardiovascular severity in Marfan Study (GEMS) and his vision of the future at the Gala of the 20 years of the Belgian Association for Marfan Syndrome.
Professor Julie DE BACKER, University of Ghent & Co-Chair of the Scientific Committee of the 101 Marfan Genomes Project, traces the "long road to precision medicine for Marfan Syndrome" during the Gala of the 20 years of the Belgian Marfan Syndrome Association (BMSA) that took place in Brussels on [...].
Mrs. Alisa HERRERO and Mr. Thomas CARTON DE WIART present "Impatients", the tool that will allow to gather the necessary funds for the research dedicated to Marfan syndrome and to support the action of patient associations during the Gala of the 20 years of the Belgian Association of Marfan Syndrome (ABSM) that took place in Brussels on the occasion of the 20th anniversary of the [...]
During the Gala for the 20th anniversary of the Belgian Marfan Syndrome Association (ABSM), which took place on 5 October 2019 at the Palais des Académies, the Presidents of the Belgian, Luxembourg and French patient associations officially signed a declaration of cooperation for the 101 Genomes Project dedicated to Marfan Syndrome. Charter" version [...]
The Gala for the 20th anniversary of the Belgian Association of Marfan Syndrome (ABSM) ended in apotheosis with a performance of Sergeï Rachmaninov by Mrs Olga Dubois and Mr Gabriel Diaconu in the beautiful Marble Gallery of the Palais des Académies. Together, they interpreted 4 pieces: 1) Сирень / Siren / Lilac [...]
Mrs. Yvonne JOUSTEN and Mr. Léon BRANDT " ABSM is 20 years old! "Prof. Anne DE PAEPE " ABSM, 20 years of research support " Prof. Julie DE BACKER " The long road to precision medicine for the MFS " Ludivine VERBOOGEN and Romain ROMAN " The ABSM is 20 years old !
Dear all, Thanks to you, the Anniversary Gala Day of the Belgian Marfan Syndrome Association on 5 October 2019 was a great success! Success in terms of attendance, donations, quality of interventions but especially in terms of emotions and sharing. You will be able to (re)live this day by following this [...]
On 5 October 2019, from 9 a.m. to 1 p.m., at the Palais des Académies, the fourth meeting of the Scientific Committee of Fondation 101 Génomes was held. Physicians and researchers Catherine Boileau, Guillaume Jondeau, Anne De Paepe, Julie De Backer, Bart Loeys, Guillaume Smits, Paul Coucke and Aline Verstraeten was present at that meeting...
Dear supporters, We are delighted to invite you to the Gala that will take place on Saturday 5 October 2019 from 1.30 p.m. at the Palais des Académies (Rue Ducale 1, 1000 Brussels) on the occasion of the 20th anniversary of the Belgian Marfan Syndrome Association (BMSA). The ABSM has decided to associate us closely with this event.
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 [...]
The Fondation 101 Génomes and Delen Bank organized with the invaluable help of Professor Michel Goldman a Conference evening on Friday 29 March 2019 at the Brussels headquarters of the Bank. At this evening, Professor Anne de Paepe, Pro-Rector of the University of Ghent and President of the Fonds 101 Génomes at the Fondation ROI Baudouin [...]
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 May 5, 2019, 45 runners participated in the 10km of Uccle to support the action of Fondation 101 Génomes. For the second consecutive year, the F101G took part in the 12th edition of the Uccle 10km, a friendly and family run that starts in the beautiful Wolvendaele park. This year 45 runners took part in the race.
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 [...]
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