Les Extra-Vaillants - MYT1L is a non-profit association under the French law of 1901, focusing on neurodevelopmental syndrome linked to MYT1L gene anomalies (anomalies in the gene sequence, or loss of part or all of the gene).
It was created in 2021 by parents boosted by a team of physicians in clinical genetics and molecular genetics motivated by the subject.
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The Extra-Vaillants MYT1L association is the first in France and internationally to focus on the MYT1L gene.
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In collaboration with Dr. Juliette Coursimault, clinical geneticist at Rouen University Hospital, and with the support of the AnDDI-Rares health network, we have obtained recognition and classification of the disease in the Maladies Rares health system in 2023, with Orphanet code 647799.
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Our mission: to increase knowledge and awareness, to improve understanding and support, and to open up the field of possibilities for each of the different profiles of patients affected by this rare genetic disease, at every stage of their lives. ​
We are delighted to see the development of connections and collaborations in France and internationally around MYT1L syndrome.
The association is recognized as being of general interest and is eligible for tax deduction rights in France.
It is supported and accompanied by the Reference Center for Developmental Anomalies at Rouen University Hospital and by the AnDDi-Rares health sector.
The association Les Extra-Vaillants MYT1L is a member of the Alliance of Rare Diseases.
Our identity
The COLORS represent ALL THE VALIANT , all the same and at the same time a little different.
The ELEPHANT symbolizes an extremely sociable species, full of compassion, attentive to each other. And according to Buddhism, elephants embody mental strength.
VAILLANT representation of the strength, courage, commitment, sensitivity of people with this syndrome
We contact
First contact by email preferably or via Facebook messaging
Of course, we will be available by phone or video if you wish.
Valérie, Stéphanie, Simon, Sandra, Katia, Delphine et Aline at your service.