Fondation 101 Génomes (F101G)
It Fondation 101 Génomeswas created in November 2017 by the parents of a young boy with a rare disease.
F101G aims to promote research by providing scientists with a cross-database containing genomic and phenotypic data from patients with rare diseases. It is hoped that this tool, accessible through a secure computer platform, will allow researchers to identify the existence of possible modifier genes that would protect some people from the major diseases usually caused by the rare disease that affects them. The identification of possible modifier genes could make it possible to consider the development of treatments that replicate the effects of these protective modifier genes in patients in whom these genes are not activated in the same way.
The F101G was born from reading an interview with Professor Hal Dietz
The F101G was born from reading an interview with Professor Hal Dietz in which it was stated that the cross-referencing of genomic and phenotypic data could lead to the understanding of".how natural genetic variants can protect some people from the consequences of a fibrillin-1 mutation" and that on this basis scientists might possibly be able to "identify drugs that can mimic nature's successful strategy" [WEISMAN R., "Meet Your Gene: An Introduction to the Marfan gene and Current Research"10 January 2017 available here].
This approach is in line with those of the Genome-wide association studies (GWAS) who have already had some success in the study of certain rare diseases. [RIORDAN J.D., NADEAU J. H.,"From Peas to Disease: Modify Genes, Network resilience and the genetics of Health", " in The American Journal of Human Genetics, 101, 177-191, 3 August 2017, http://dx.doi.org/10.1016/j.ajhg.2017.06.004].
The F101G intends to build on advances in genomics (Whole Genome Sequencing - WGS) to try to offer new therapeutic approaches to patients with rare genetic diseases. Concretely, the F101G intends to engage in fundraising to finance the establishment of a bioinformatics platform that will be able to host projects specific to different rare diseases such as Projet 101 Génomes Marfans described below.
Fonds 101 Génomes
The Fund Management Committee met for the first time on 11 January 2018 in the presence of its Chairman, Professor Anne De PaepeMr Gerrit Rauws (Director of the King Baudouin Foundation), Mrs Annemie T'Seyen (Project coordinator at the King Baudouin Foundation) and two representatives of F101G.
On the occasion of Rare Disease Day on 28 February 2018, the King Baudouin Foundation published The narrative of the circumstances that led to the creation of the Fonds 101 Génomes. The King Baudouin Foundation also published an article about the Fonds 101 Génomes in number 112 of the journal "Fields of Vision" (available Here in English And Here in Dutch or).
The King Baudouin Foundation invited the F101G to join the workshops dedicated to the reflection on the use of genomic data in health care, the first module of which was organised on 23 February 2018. This reflection is being conducted in parallel with the publication on 19 February 2018 by the Federal Centre of Expertise for Health Care (KCE) of a Report on the challenges posed by complete genome sequencing (WGS) for the Belgian health care system. This report calls for the prudent introduction of WGS in Belgium in the form of a pilot project. Complementarities between the action of the F101G and the pilot project recommended by the KCE could be envisaged.
Projet 101 Génomes Marfans
The (P101GMProjet 101 Génomes Marfans) is the pilot project of the F101G. P101GM is dedicated to the Marfan syndrome. It is built on the basis of a (expandable) starting cohort of 101 patients with Marfan syndrome who would agree to share their genomic and phenotypic data in order to provide researchers with the data necessary to attempt to identify the existence of possible modifier genes that could protect them from cardiovascular afflictions (and possibly extendable at a later stage to musculoskeletal and ocular afflictions).
The feedback from the scientists to whom the P101GM was submitted was particularly positive. The Professors Anne De Paepe (UZGent), Julie De Backer (UZGent), Paul Coucke (UZGent), Marjolijn Renard (UZGent), Bart Loeys (UZAntwerp), Aline Verstraeten (UZAntwerp), Guillaume Smits (HUDERF) and Catherine Boileau (Hôpital Bichat, Paris) have agreed to join the Scientific Committee of P101GM.
From left to right: Madame Ludivine Verboogen (F101G), Professor Anne De Paepe (UZGent), Dr. Michel Verboogen (F101G), Mr Romain Alderweireldt (F101G), Mr René Havaux (Banque Delen), Madame Cécile Jacquet (F101G), Professor Bart Loeys (UZA), Madam Dr. Aline Verstraeten (UZA), Professor Julie De Backer (UZGent) and Dr. Guillaume Smits (HUDERF) during the philanthropic evening organised by the Delen Bank on 23 November 2017 in Presence of H.R.H. Prince Lorenz of Belgium.
The Scientific Committee of P101GM met for the first time in Brussels on 19 January 2018 with two objectives: (1) to determine the phenotypic data to be collected to ensure that the bioinformatics tool best meets the needs of the research community when it becomes operational; (2) to consider different cohort composition strategies that would maximize the probability of advancing researchers' understanding based on the genomic data of 101 participants. This meeting made significant progress.
Mrs Véronique Vrinds, President of the Belgian Association of Marfan Syndrome (ABSM), Mr Patrice Touboulie, President of the French Association of Marfan Syndrome (AssoMarfans), and Mrs Lauriane Janssen, President of the Marfan Europe Network (M.E.N.), offered the support of their respective organizations to the P101GM.
The ABSM has taken the initiative to nominate one of the founders of the F101G for the Edelweiss 2018 prize awarded by RADIORG The award was given by the Belgian Rare Disease Association -the Coupole Association which gathers most of the Belgian rare disease patient organisations- for a unique contribution to a rare disease network. We were very surprised and above all honoured to receive this award on 10 March 2018.
In his lifetime, Mr Touboulie, president of the Association Marfans thumb française, had expressed the wish to invest personally in the promotion of F101G in France. He had undertaken a series of steps which were, in particular, concretized by the opening of an account for the benefit of the F101G to the Fondation de France.
The support of the French Marfans thumb Association has been realised by the invitation to Present the Projet 101 Génomes Marfans During the the Marfans national meeting organised by the French Association on March 24, 2018 in Paris (the document that served as a basis for this presentation can be downloaded by following this link: 20180509 F101G P101GM MASTER).
The President of the M.E.N. has secured an invitation to Projet 101 Génomes Marfans to present a poster at the 10Th International Research Symposium on Marfan Syndrome and Related Disorders organised by the Marfan Foundation from 3 to 6 May 2018 in Amsterdam (The abstract of this poster can be downloaded here).
The genesis and objectives of the 101 Genomes Project dedicated to Marfan Syndrome are recounted in the following video:
To learn more you can download...
Our PPT presentation of the F101G and P101GM:
- In French: 20181022 F101G P101GM Eurordis en two PAGES
- In English: 20181022 F101G P101GM Eurordis in TWO PAGES
- In Dutch: 20180923 02 F101G FAMHP VASCERN & 101G NL For the FAMHP
- In Dutch again: 20181212 PAEPE presentatie F101G VVO Leuven Version presented by LMadame Professor Anne De Paepe:
The reviews dedicated to the F101G and P101G:
The scientific poster presented at the Marfan 2018 symposium in Amsterdam:
The white paper of F101G and P101GM:
F101G was established on 10 November 2017. It has the company number BE0684609172. Its statutes were published in the annexes of the Belgian Moniteur on 14 November 2017. Its day-to-day management has been entrusted to its Managing Director, Mrs. Ludivine Verboogen.
The Convention signed on 17 November 2017 with the King Baudouin Foundation provides that donations made in Belgium, Luxembourg and the Netherlands for F101G are to be paid into the IBAN Post Bank account: BE10-0000-0000-0000-0404 (BIC: BPOTBEB1) with the structured communication ***017/1730/00036***.
Donations made in Belgium to F101G are deductible up to 45% of the amount donated.
Donations made in Luxembourg to F101G are deductible up to 100% of the amount donated.
In the Netherlands, donations to the F101G of less than 5,000 euros are deductible at a rate of 125% of the given amount, in excess of 5,000 euros donations are déducibles to 100% of the given amount + 1,250 euros.
Donations made in France for F101G are paid to the Fondation de France :
- Via The online payment module of the FdF Selecting in the Menu "Belgium" the beneficiary "TGE-101 genomes Fund";
- by making a bank transfer to the HSBC IBAN account: FR76-3005-6005-0205-0200-0363-678 (BIC : CCFRFRPP) accompanied by the communication "00459/ TGE- 101 Genomes Fund";
- by cheque made out to "Fondation de France/00459/ TGE-Fonds 101 Génomes" to be sent to the attention of Noura Kihel at the Fondation de France, Avenue Hoche 40, 75008 Paris, France.
Donations made in France for the benefit of the F101G are deductible in the amount of: 66% of the income tax.