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Projects with you patients, families and professionals

Find presentations, resources on the YouTube channel
of the association Les Extra-Vaillants MYT1L, 

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.

  • Listening, support

  • 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.

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