European Family & Research Conferences MED13L SYNDROME ASSOCIATION
European MED13L Research & Family Conference
Provisional Program (updated June 16)
October 17–18, 2025
Novotel/Ibis Lyon Gerland Musée des Confluences
70 avenue Leclerc, 69007 Lyon, France
Under the auspices of the French MED13L Scientific Council
Co-Chairs: Dr. Jamal Ghoumid & Dr. Thomas Smol, Lille University Hospital
Friday, October 17, 2025 – Afternoon [1:30 PM – 6:00 PM]
Theme 1 – MED13L and Genetics
- The History of MED13L: From Heart Disease to Neurodevelopmental Disorder (Dr Reza Asadollahi, Université de Zurich, Suisse) (Visio 15 min + 5 min Q&A)
- How to Understand a Genetic Report – Dr. Thomas Smol, Lille University Hospital (15 min + 5 min Q&A)
- The Mediator Complex and MED Subunits – Dr. Alexis Verger, University of Lille (15 min + 5 min Q&A)
Theme 2 – Clinical Aspects
- Clinical Features of MED13L Syndrome – Dr. Roselyne Caumes, Lille University Hospital (15 min + 5 min Q&A)
- Language Disorders in MED13L Syndrome – Marissa Weyer Mitchel, Geisinger Medical Institute, Germany (Visio 15 min + 5 min Q&A)
- Mediator-related Disorders: Differences and Similarities – Speaker TBC (15 min + 5 min Q&A)
- Language Disorders in MED13L Syndrome – Marissa Weyer Mitchel, Geisinger Medical Institute, Germany (Visio 15 min + 5 min Q&A)
Theme 3 – Scientific Research
- Recent Scientific Research on MED13L – Dr. Jamal Ghoumid, Lille University Hospital (15 min + 5 min Q&A)
- Perspectives on Future Clinical Management – Dr Jéromine Carret, University of Lille (10 min + 5 min Q&A)
- Organoid Models: An Innovative Approach to Understanding MED13L – Dr. Johnny Bou-Rouphael, Paris Brain Institute (15 min + 5 min Q&A)
Evening
- 6:00 PM – 7:30 PM: Free time
- 7:30 PM – 9:00 PM: Dinner (participation of 20€/pers. Free for children)
Saturday, October 18, 2025 – Morning
- 10:00 AM – 11:00 AM: Updates from the 3 European MED13L Associations (France, Spain, Germany, UK)
- 11:00 AM – 12:00 PM: Participant Workshops
- 12:00 PM – 12:30 PM: Workshop Feedback
- 12:30 PM – 2:00 PM: Lunch (offered)
Saturday Afternoon
- 2:00 PM – 3:30 PM: Talk by Catherine Thibaud – Speech Therapist, Psychologist, Trainer, and Author
- 4:00 PM – 5:30 PM: Music Therapy Show for children and parents (TBC)
Additional Information
- Childcare and Activities:
Volunteers will supervise children and offer various activities throughout the two days
- Osteopathy Sessions: Offered to children by the Lyon School of Osteopathy (TBC)
The scientific day on October 17 is open to families and healthcare professionals interested in MED13L syndrome.
October 18 is reserved for families
Admission to the MED13L meetings is free of charge but reservations are required, subject to availability.
Information: contact.med13l@gmail.com
We do not take in charge your hotel fees. We advise you to book your room on spot at MED13L special rates at
NOVOTEL **** 115€ with breakfast
IBIS ***90 € with breakfast
Information: H0736@accor.com
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