📍EVENTS NEWS
Click on the images to open the documents in ENGLISH
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More than 130 members of several families in person, including 34 Vaillants, aged between 2 and 35, from 10 different countries
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Professionals mobilized from France, Germany and the United States
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200 people on site in person on the day of the conferences
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an international videoconference connection
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simultaneous French/English and English/French translation
ROUEN 5, 6, and 7 JUNE 2025
2ND DAY FAMILIES, CLINICIANS,
RESEARCHERS FOCUSING ON THE MYT1L GENE
Thursday, 5 June
Afternoon of meetings and games at HAPPY CITY
Friday, 6 June
CONFERENCES OPEN TO ALL
IN PERSON AND VIA VIDEO CONFERENCE
IN FRENCH WITH SIMULTANEOUS TRANSLATION INTO ENGLISH
Saturday, June 7
Discover the city by mini train and enjoy lunch at Madame's restaurant
Sunday, June 8
Fun gathering and discussions between the Extra-Vaillants MYT1L association and the MYT1L project foundation
🧡 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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Creation of a foundation in the United States!
THE MYT1L PROJECT
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.
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
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.