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 📍EVENTS NEWS

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Already nearly 130 members of several families in Rouen, including 35 Vaillants, aged between 2 and 35, from 10 different countries
Click on the images to open the documents in ENGLISH
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Children's welcome for June 6 COMPLETE

ROUEN JUNE 5, 6 and 7, 2025

REGISTRATION NOW OPEN 

2ND FAMILIES, CLINICIANS AND RESEARCHERS DAY ON THE MYT1L GENE 

 

FREE & OBLIGATORY REGISTRATION

CONFERENCES ON JUNE 6 - OPEN TO ALL

IN PERSON AND BY VIDEOCONFERENCE

IN FRENCH WITH SIMULTANEOUS TRANSLATION IN ENGLISH

 

TWO FAMILY EVENTS ON JUNE 5 AND 7

 

HOW TO REGISTER ?

 CONFERENCE DAY on June 6, 25: https://www.linscription.com/pro/activite.php?P1=190052

 

 DAYS of June 5 and 7 25 + HOTEL NIGHTS: extravaillants@gmail.com 

  Questionnaire (click on image) to be completed and returned to: extravaillants@gmail.com 

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YOU CAN HELP US MAKE THIS MEETING AMAZING! THANK YOU
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🧡 ALL OUR EFFORTS, OUR COMMITMENT AND OUR PROJECTS COULD NOT EXIST WITHOUT YOU, DONORS.

A heartfelt THANK YOU 🩷 🩵 💚 
for your trust and generosity.

To be considered, our work recognized, supported and valued... is particularly touching and motivating.
Thank you.
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la famille éléphants MYT1L s'agrandit
Creation of a foundation in the United States!

THE MYT1L PROJECT

https://www.myraregene.org/

Congratulations and welcome to the MYT1L elephant community.

Congratulations to Elizabeth, Kate, Matt, Brittany, Katie, Allison, Farah and Amanda for their commitment.  

Long live the unions of parents, the synergies between countries,
for a better tomorrow for every MYT1L patient, no matter where they live.

PNMR 4 2025-2030
LAUNCH OF THE NATIONAL PLAN FOR RARE DISEASES 4 (PNMR4)
Click on the image to access the document (in french)

This morning, February 25, 2025, the government launched at the Ministry of Health the National Rare Diseases Plan 2025-2030 (PNMR4) entitled "From the territories to Europe". This plan is based on 4 main axes and 26 objectives, with the ambition of guaranteeing each patient and each family a rapid diagnosis, appropriate care and access to treatments:

• AXIS 1 - IMPROVING THE LIFE AND CARE PATHWAY
• AXIS 2 - FACILITATE AND ACCELERATE DIAGNOSIS
• AXIS 3 - PROMOTING ACCESS TO TREATMENTS FOR RARE DISEASES
• AXIS 4 - DEVELOPING DATABASES AND BIOBANKS
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HEIDELBERG, GERMANY JUNE 2025 

MINI SYMPOSIUM  MYT1L​ GENE

 

It's a great pleasure and honour for Les Extra-Vaillants MYT1L to be part of a dedicated Mini-symposium on MYT1L syndrome during the 4th Triennial Meeting of the International Alliance of Academies of Childhood Disability (IAACD) and the 37th Annual Meeting of the European Academy Of Childhood Disability (EACD) in Heidelberg, Germany, from June 24th to 28th, 2025.

Together with the chairs, Prof. Dr. Maja Hempel, Head of Genetic Outpatient Clinic, University Hospital Heidelberg, Germany, and Dr. Moritz Mall, research group leader, Hector Institute for Translational Brain Research at the German Cancer Research Center, we will be presenting along with Dr. Juliette Coursimault, clinical geneticist, CHU Rouen, to take part in a symposium on the role of MYT1L in health and disease at these EACD and IAACD events.

Huge gratitude to Dr Moritz Mall for his support and this incredible opportunity to promote awareness and discuss future directions for MYT1L Syndrome at this world-leading conference focused on childhood-onset disabilities.

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