📍EVENTS NEWS
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.
Click on the image for the links
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
Harmonize and Guide: Offer a common framework for care (diagnostic and therapeutic) across the entire territory to reduce medical wandering.
Supporting Professionals: Providing practical support to doctors (general practitioners and specialists) as well as paramedical professionals, for precise care.
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.
⚖️ A valuable administrative and medical tool
Reference document: It helps the attending physician to establish the treatment protocol, in particular to facilitate obtaining exemption from the co-payment (Off-List Condition).
Scientific expertise: Developed according to the rigorous method of the High Authority for Health (HAS), it is based on an exhaustive analysis of international bibliographic data.
Evolvability: This document describes the current reference approach (deletions or point variations) and will be regularly updated according to scientific advances.
Membership Opening 2026
🌟 The FALC MYT1L “I understand my difference” cards are available 🎉
(more information in the 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
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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
👏 THANK YOU to the AnDDI-Rares Health Network for their trust and financial, technical, and human support, which made this day possible and these replays accessible.
You can find all these resources, and many more, on the AnDDI-Rares Health Network YouTube channel and
on the Extra-Vaillants MYT1L YouTube channel.
