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ROUEN JUNE 5, 6 and 7, 2025 2ND DAY FAMILIES, CLINICIANS, RESEARCHERS

AROUND THE MYT1L GENE

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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
  • Professionals mobilized from France, Germany and the United States
  • 200 people on site in person on the day of the conferences
  • an international videoconference connection
  • simultaneous French/English and English/French translation

Thursday, June 5   Afternoon of games and meet-up at HAPPY CITY

Friday, June 6   Conferences in French with simultaneous English translation

Saturday, June 7.  City tour on the little tourist train and dinner at Chez Madame

Sunday, June 8.  Friendly gathering and informal exchanges between Les Extra-Vaillants MYT1L and The MYT1L Project Foundation

Health collaborations 

Watch the Replays in english translation
of the 2nd International MYT1L Day Online

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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

 

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  Characterization of language and prosody

 

Cognitive and behavioral manifestations

in MYT1L syndrome

 

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👏 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 andon the Extra-Vaillants MYT1L YouTube channel.

HEIDELBERG, GERMANY JUNE 2025, MYT1L GENE MINI SYMPOSIUM

It was a great pleasure and honor for Les Extra-Vaillants MYT1L to take part in a dedicated mini-symposium on MYT1L syndrome on June 26th, 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), held in Heidelberg, Germany, from June 24th to 28th, 2025.

We were invited by the symposium chairs, Prof. Dr. Maja Hempel, Head of the Genetic Outpatient Clinic at University Hospital Heidelberg, Germany, and Dr. Moritz Mall, Research Group Leader at the Hector Institute for Translational Brain Research at the German Cancer Research Center, and joined by Dr. Juliette Coursimault, Clinical Geneticist at CHU Rouen.

We were also delighted to reconnect with Dr. Jorge Granadillo, Medical Geneticist at Washington University School of Medicine in St. Louis, USA, who had joined us just a few weeks earlier for the 2nd MYT1L Family–Clinician–Researcher Meeting held in early June 2025 in Rouen.

June 26th was a day rich in discussions, discoveries, and plans for collaboration.

We had the opportunity to meet the teams of Dr. Moritz Mall and Prof. Maja Hempel in their respective units at the Heidelberg Clinic. On the agenda: a tour of the genetics department and research laboratories, exchanges with the teams, discussions on potential projects, and a virtual meeting with several German families.

The day ended on a warm and friendly note over a shared meal.

Thank you for your hospitality and for these essential moments!

Long live collaboration and Franco-German friendship! 🇫🇷🇩🇪

It was also a great pleasure to attend the conference sessions in the following days and to witness the international medical community’s commitment to improving the lives of patients. Many thanks to the organizers for their kind invitation.

1st International Day of Families, Clinicians, Researchers around the MYT1L gene
There were 99 of us present at the Rouen University Hospital: children, students, families, professionals, speakers, organizers!
There were nearly 60 of us connected via ZOOM at the height of the day.
There will be even more of us connected to the Replays soon available

All our sincere and enormous thanks to all the speakers of this incredible day, to the reference center for developmental anomalies at the ROUEN University Hospital, to the AnDDI-Rares health sector, to the artists, to the students, to our donors (in kind, in skills, in financial support).
To you strangers, families, friends, associations, agencies, companies, hoteliers, entrepreneurs....
A special thought for Dr Juliette Coursimault, Anne-Marie Guérrot, François Lecoquierre and for Gwendoline Giot.

 

Reference publication

Here are some images ... many more on our YouTube channel
Thank you!!!! from all our hearts as parents and valiant people!
Find the families’ testimonies about this day in “ the champions’ corner

In-depth clinical-biological characterization of MYT1L gene haploinsufficiency. Literature review and description of a new cohort of 40 patients

Article by the team of the Clinical Genetics Unit of the Rouen University Hospital including Dr Juliette Coursimault, Dr Anne -Marie Guerrot and Dr François Lecoquierre.
Human Genetics Journal / November 8, 2021

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