📍NEWS & EVENTS
Eating behaviour and MYT1L-related neurodevelopmental disorder: the study is published
This multicenter study describes in detail the eating behaviors of 21 people (14 children and 7 adults, aged 6 to 37) with a MYT1L gene-linked neurodevelopmental disorder and overweight, obesity, or eating behavior disturbances.
Coursimault et al., Orphanet Journal of Rare Diseases, 2026. Work carried out by Dr Juliette Coursimault (Genetics Department, Rouen University Hospital), Professor Christine Poitou and Professor Béatrice Dubern (PRADORT Reference Centre, AP-HP).
The key points are presented in the carousel. For full details, consult the freely accessible reference publication and our summary in French, written by the association. Only the reference publication is authoritative.
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ONGOING PROJECT
TAKE PART!
MDPH PRACTICAL GUIDE
MYT1L* SYNDROME
ALL AGE GROUPS
UPON REQUEST BY COMPLETING THE FORM
Please note: these information documents reflect the amounts and rates known as of August 31, 2026. They do not replace professional advice. Practices vary from one court and MDPH (Departmental Center for Disabled Persons) to another. A bill reforming the legal protection of adults is currently under review in the French Parliament. Check with the guardianship court registry, the MDPH, and a notary before taking any binding steps.
MDPH PRACTICAL GUIDE
MYT1L* SYNDROME
ALL AGE GROUPS
UPON REQUEST BY COMPLETING THE FORM
Read this before taking any action!
Please refer to the commitment note attached to this guide.
This document is not intended to replace professional support: it aims to provide you with the necessary tools to make your voice heard and defend the rights of your loved one in your legal proceedings.
The systems, laws, and regulations are constantly evolving. This guide will be updated as needed—your feedback, experiences, and suggestions are invaluable in keeping it current.
PNDS MYT1L: A new milestone for care
The National Diagnostic and Care Protocol (PNDS) dedicated to MYT1L syndrome constitutes the official reference for harmonizing the healthcare pathway for patients, in France and abroad, adapting to the specificities of each country.
🎯 The 3 main objectives
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Harmonize and Guide: Offer a common framework for care (diagnostic and therapeutic) across the entire territory to shorten the diagnostic odyssey.
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Supporting Professionals: Providing practical support to doctors (general practitioners and specialists) as well as paramedical professionals, for precise care.
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Improving Daily Life: Ensuring a better quality of life for patients and their families by anticipating the specific needs related to the MYT1L gene mutation.
Click on the image for the links
⚖️ A valuable administrative and medical tool
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Reference document: It helps the attending physician to establish the treatment protocol, in particular to facilitate obtaining full coverage of care costs under the long-term condition scheme (ALD).
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Scientific expertise: Developed according to the rigorous method of the French National Authority for Health (HAS), it is based on an exhaustive analysis of international bibliographic data.
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Regular updates: This document describes the current reference approach (deletions or point variants) and will be regularly updated according to scientific advances.
2026 membership is open
🌟 The FALC MYT1L “I understand my difference” cards are available in French 🎉
(see FALC section)
👉 A simple and suitable tool for people with MYT1L syndrome:
✨ better understand their daily lives
✨ identify difficulties
✨ highlight their strengths
✨ find ways to help
📩 ONLY UPON REQUEST VIA THE FORM NEXT TO THIS
· Design: FALC inter-sector working group AnDDI-Rares and DéfiScience
· MYT1L adaptation: Association Les Extra-Vaillants MYT1L.
· Graphics – Illustration: Clémentine Marot (+ royalty-free sources for MYT1L adaptations)
⚠️ No commercial use. Any request implies acceptance of the terms of use.
🙏 Thank you for respecting the collaborative and voluntary work carried out around this project.
Description and Terms of Use (in french)
CLICK ON THE IMAGE
Watch the Replays in english translation
of the 2nd International MYT1L Day Online
Association Les Extra-Vaillants MYT1L,
Overview of Knowledge and Research in Clinical and Basic Genetics in France, Germany, and the United States
Click on the image
Neurodevelopmental Disorders and Epilepsy,
Nutritional Aspects in MYT1L Syndrome,
and Transition from Childhood to Adulthood
Click on the image
Characterization of language and prosody
Cognitive and behavioral manifestations
in MYT1L syndrome
Click on the image