Partners

Project partners 101 genomes dedicated to Marfan syndrome

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 project 101 genomes dedicated to the syndrome of Marfan.

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).

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Partners of the Fondation 101 Génomes

King Baudouin Foundation

The F101G has joined forces with the King Baudouin Foundation to jointly manage the Fonds 101 Génomes intended for Collect the necessary sums To the financing of its activities. 

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.

The Convention signed on 17 November 2017 with the King Baudouin Foundation provides that donations made in Belgium, France, the Netherlands and Luxembourg for F101G are to be paid into the IBAN Post Bank account: BE10-0000-000000-0404 (BIC: BPOTBEB1) together with the structured communication ***017/1730/00036***.

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.

Radio org

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.