GEMS webinars for the Association Française des Syndromes de Marfan et Apparentés (AssoMarfans)


GEMS, 2023

At the request of the Association Française des Syndromes de Marfan et Apparentés (AssoMarfans), Ludivine has recorded a video and we are organizing various webinar sessions to help people who wish to join the GEMS study (https://www.101gems.be/site). Here is the e-mail sent by AssoMarfans to its members: Advance research on Marfan syndrome [...].

June 6, 2023

"Meet the Boss" interview with Radio Judaica


2023

On Wednesday May 31, 2023, Ludivine and Romain were invited by Olivier Sokolski and Laurent Poznantek to take part in the "Meet the Boss" program on Radio Judaica to present the work of 101 Génomes and share their vision for research into rare diseases. During the show, Ludivine and Romain spoke about the [...].

June 6, 2023

VASCERN ePAG Exchange: 101 Genomes and GEMS at UZA


2023

On January 20 and 21, 2023, two days of seminars about 101 Genomes and the GEMS project were organized at the UZA at the request of the ePAGs (patient organization representatives) of the VASCERN (European Reference Network for Rare Vascular Diseases). The main objectives were to understand the action of 101 Genomes, the interest of [...]

January 23, 2023

2023: Heading for Tomorrow


2023

Dear Supporters, First of all, we would like to wish you a happy holiday season and a wonderful year 2023. Retrospective 2022 We would like to share with you some of the major milestones that were reached in 2022 by Fondation 101 Génomes. This year, we received approval from the Erasmus Ethics Committee and [...]

December 29, 2022

Marfan Europe Network : What's new since Drammen?


2022, GEMS

On September 16, 2022, Romain was invited to present to the 'Marfan Europe Network' (M.E.N.) the progress made by the 101 Marfan Genomes Project since the previous network meeting in Drammen in September 2019. It was an excellent opportunity to give an update on the implementation of the biobank (BioB) and the Genomic [...]

September 21, 2022

Hiring a postdoctoral researcher in machine learning and bioinformatics for the Genome4Brussels consortium


2022, G4BXL

In the framework of the Genome4Brussels (G4BXL) consortium, Prof. Tom Lenaerts and Dr. Sofia Papadimitriou (info) are hiring a researcher to join the Interuniversity Institute of Bioinformatics in Brussels (http://www.ibsquare.be) and the ULB Machine Learning group (http://mlg.ulb.ac.be) to continue their team's fascinating work on the oligogenic causes of rare and less rare diseases. The announcement is available [...]

21 May 2022

May 2022 bring you health, resilience and joy!


2022

Thank you for your support and generosity during a year 2021 that has been difficult for many of us. Despite this, in 2021, the laboratory (GEMS) and bioinformatics (Genome4BXL) researchers that we fund thanks to you have been working tirelessly on Marfan syndrome. The development of the in vitro genomic biobank will be a key part of the [...]

6 January 2022

Success of the Filigranes action and photos of the night of 29 November


2022

Thanks to your presence, your purchases (on the spot or online) and your donations, the Filigranes action brought in almost 20,000 euros at Fondation 101 Génomes ! Thank you all for making the Filigranes action such a success! Thank you to our sponsors for this event and especially to the Bertinchamps brewery, [...]

6 January 2022

Filigranes | Online action for the benefit of the F101G from 22 to 29 November 2021!


2021

ONLINE ACTION: From 22 to 29 November 2021: 20% of your online purchases on filigranes.be with the promo code "101 GENOMES" are donated to Fondation 101 Génomes! Order now online on filigranes.be with the promo code "101 GENOMES" the books, comics, toys, wines, cosmetics, etc. that you will offer to the [...]

22 November 2021

Genome4Brussels: AI, Genomics & Rare Diseases


GEMVAP, 2021, G4BXL

In 2019, the 101 Genomes Foundation, the Interuniversity Institute Of Bioinformatics Brussels (IB2), the ULB Center of Human Genetics (CHG) and the ULB Machine Learning Group (MLG) participated in a call for projects launched by Innoviris with the "Genome4Brussels" project. Within the framework of this project, they have decided to create an ecosystem that will allow the optimisation of the [...]

31 May 2021

Survey on Diagnostic Wandering in Rare Diseases in Belgium


2021

Professor Sandy Tubeuf from UCL is conducting a 'Survey on Diagnostic Errancy in Rare Diseases in Belgium'. Fondation 101 Génomes fully supports this research. She hopes that her findings will help to identify solutions to reduce the duration of the terrible diagnosis wandering. Concretely, Ludivine participated in the realisation of the questionnaire [...]

31 May 2021

Lauriane Janssen and the Fondation 101 Génomes


2019

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 [...]

May 2, 2020

"Hope makes our heart beat marfan" Lauriane Janssen (9 May 1986- 20 November 2019)


2019

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 [...].

November 21, 2019

Big data and artificial intelligence, sources of solutions for rare diseases


GEMVAP, 2019

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. […]

November 12, 2019

Invitation "One day, one night..."


2019

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. […]

October 13, 2019

"Together to save 10 years of research" by Mrs Ludivine VERBOOGEN and Mr Romain ALDERWEIRELDT


ABSM 20 Gala, 2019

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.

October 13, 2019

Find all the photos of the ABSM 20 Years Gala


ABSM 20 Gala, 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)  

October 13, 2019

"Artificial Intelligence (AI) for the diagnosis of Marfan Syndrome" by Professor Guillaume Smits


ABSM 20 Gala, 2019

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 [...].

12 October 2019

"An evocation of current research and future perspectives" by Professor Bart Loeys


ABSM 20 Gala, 2019

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.

12 October 2019

"The long road to precision medicine for Marfan syndrome" by Professor Julie De Backer


ABSM 20 Gala, 2019

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 [...].

12 October 2019

"A new approach to crowdfunding" by Mrs Alisa HERRERO and Mr Thomas CARTON DE WIART


ABSM 20 Gala, 2019

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 [...]

12 October 2019

Declaration of cooperation for the 101 Genomes project dedicated to Marfan syndrome


ABSM 20 Gala, 2019

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 [...]

October 13, 2019

Mrs Olga Dubois and Mr Gabriel Diaconu perform Sergeï Rachmaninov in the Marble Gallery


ABSM 20 Gala, 2019

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 [...]

October 13, 2019

Watch the speakers' speeches at the ABSM 20 Years Gala


ABSM 20 Gala, 2019

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 !

12 October 2019

Acknowledgements


ABSM 20 Gala, 2019

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 [...]

October 13, 2019

Fourth meeting of the F101G Scientific Committee


ABSM 20 Gala, Scientific Committee, 2019

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...

October 13, 2019

Invitation to the ABSM 20 Years Gala at the Palais des Académies on 5 October 2019


ABSM 20 Gala, 2019

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.

September 20, 2019

"Genome and Medicine: Conquests and Frontiers" by Prof. Alain Fischer, 29 March 2019


2019

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 [...]

March 29, 2019

On May 5, 2019, the F101G ran the 10km of Uccle!


F101G RUN, 2019

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.

April 5, 2019

On May 6, 2018, run the 10km of Uccle with the F101G!


F101G RUN, 2018

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 [...]

March 15, 2018

Fondation 101 Génomes, Fonds 101 Génomes & Projet 101 Génomes Marfans


2017

Fondation 101 Génomes (F101G) The Fondation 101 Génomes was created in November 2017 by the parents of a little boy with a rare disease. The aim of F101G is to promote research by providing scientists with a cross-referenced database containing genomic and phenotypic data of patients with rare diseases.

December 12, 2017

At the origin


2017

Our son Aurélien, born in 2015, is suffering from a spontaneous form of Marfan syndrome diagnosed during his first year of life. Marfan syndrome is the result of connective tissue damage[1] caused by a deleterious mutation of the FBN1 gene on chromosome 15, which results in the fibrillin protein encoded by the FBN1 gene being deleted from the body's immune system.

September 3, 2015