du 7 décembre 2023
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Les Extra-Vaillants - MYT1L is a non-profit association under the French law of 1901.
MYT1L neurodevelopmental syndrome (abnormality in the gene sequence, or loss of part or all of the gene).
The association was created by parents, boosted by a team of doctors in clinical genetics and molecular genetics motivated by the subject.
Our mission: to support, inform, raise awareness and take part in the advancement of clinical and fundamental research into MYT1L gene anomalies.
Our objectives: to better understand, support, compensate and open up the field of possibilities for each of the different profiles of patients affected by this rare genetic disease, and at every stage of their lives.
The association is recognized as being in the public interest, and is eligible for tax deductions in France.
It is supported and accompanied by the Centre de Référence des anomalies du développement of the CHU de Rouen and by the AnDDi-Rares health network.
Les Extra-Vaillants MYT1L is a member of the Alliance des Maladies Rares.
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Find presentations, resources on the YouTube channel
of the association Les Extra-Vaillants MYT1L,
Projects with you patients, families and professionals
With the medical and paramedical world
Specify the medical description of MYT1L syndrome
Obtain recognition of the syndrome as a specific and unique neurodevelopmental syndrome
Develop communication tools for the different audiences on the syndrome: alert points, heterogeneity, particularities, treatment recommendations, understanding, support
Support clinical research or fundamental research projects: be the preferred link for collecting information from families abroad, encourage the participation of French patients by financing travel, accommodation if necessary, collect donations to finance a project research by allocating specific and one-off resources (e.g. research assistant over a given time).
Be the relay of promising paramedical practices for patients: collect testimonials, promote exchanges of practices, develop recommendations...
Support research, paramedical experiments on pathology.
Be a dynamic player in the health sector and the alliance of rare diseases.
Special event : Patients, Clinicians, Researchers in November 2022 in collaboration with the teams of the CHU of Rouen, the doctors in clinical genetics Dr Guerrot and Dr Coursimault of the CHU of Rouen, the AnDDi-Rares health sector and the Extra-Vaillants MYT1L.
With patients, and families
Offer tools for understanding the pathology.
Represent and defend the different expressions of the syndrome.
Represent and defend patients in the different stages of their life: from infancy to adulthood.
Develop tools, with the support of the medical and paramedical staff, to obtain recognition and rights in administrative procedures, in particular the "Maison Du Handicap", and others organizations requested by the disabled person or their family.
To be a privileged link between families affected by this pathology, between families and those working with people with this disability.
Organize meeting events for patients and their families
Being able to meet specific needs if necessary. For example, being able to help with partial funding of equipment that is not 100% supported and essential to the person.
With teachers, supervisors in the fields of sport, the arts and recreation.
promote the reading and understanding of the person carrying this syndrome in the different contexts of his life
promote the implementation of adaptation tools and adjustments necessary for patients, and participate in their reflection
encourage, promote all artistic and sporting actions as an essential need for self-expression, inclusion, social bond.
Be a privileged interlocutor to ensure rights and the implementation of decisions taken to patients.
Valérie, Stéphanie, Simon, Sandra, Katia, Delphine et Aline at your service.
Association of general interest
Association under agreement with the Centre de Référence des anomalies du développement at Rouen University Hospital
Association supported by the Filière de Santé AnDDi-Rares
Member of the Alliance des Maladies Rares
Ils nous font confiance
Merci à chacun d'entre vous d'avoir rendu, de rendre toujours plus réels nos projets pour les Vaillants
Dons en compétences
Dons en nature
À tous ceux dont nous n'avons pas le visuel
Dons et engagements de coeur
À vous tous, écoliers, collégiens, étudiants, professeurs, artistes, amis, familles, inconnus qui nous soutenez chacun à votre façon
The fairy tale and the flight of glitter, we owe them to the agency BORNEO Communication
A great team led by an incredible gentleman who offered to accompany us and put his resources and his know-how in communication at our disposal.
A few strokes of the magic wand later, a brand new logo, a graphic charter and great coaching to become pros of the networks they offer us with HUGE GENEROSITY!
Thank you, thank you for everything