1st EUCMTSC, Paris 9-10 June 2023

CONFERENCE VIDEOS

The entire conference has been recorded, and you can follow the plenaries, the workshops and the concluding session if you click on the videos each title at the place indicated (hour: minute:second)

Opening Plenary

Welcome:

00.15 Daniel Tanesse, President of CMT-EUROPE (ECMTF)
06:50 Ingolf Pernice, Vice-President of CMT-EUROPE, Conference Manager
Video message: 16:05 Stella Kyriakides, EU Commissioner for Health and Food Safety
Greetings: 21:50 Alexandre Méjat, Director AFMTelethon & EURORDIS
27:23 Agnès Firmin Le Bodo, ministre déléguée chargée des Professions de santé

Introductions: CMT as a common challenge for scientists, clinicians and other health professionals – disciplinary cooperation and potentials of interdisciplinary synergies.
36:00 European projects/perspectives : Shahram Attarian, Marseilles
51:23 American projects/perspectives : Stephan Züchner, Miami

Working Groups on Substance: Three disciplinary approaches to problem solving

Bio- and medical sciences: From data (management and analysis) to therapies
1:03:39 co-moderation: Michael Sereda / Filippo Genovese

Presenters: (1:06:00) Davide Pareyson (1:29:30) Francesc Palau (1:54:56) Wolfgang
M. Pernice/Helena F. Pernice
Rapporteur: Rafael Sivera (2:16:00)

Working Groups on Substance: Three disciplinary approaches to problem solving

Clinical diagnosis and treatment: Potentials of genetic analysis and engineering
00:48 co-moderation : Peter De Jonghe / (40:20) Arabela Acalinei

Presenters : (03:00) Valérie Delague; (43:08) Angelo Schenone
Rapporteur : Maike Dohrn

Working Groups on Substance: Three disciplinary approaches to problem solving

Therapeutic practice and feedback: Challenges and specific tasks for therapists
co-moderation : Carsten Schröter / Alexandre Hoyau

Presenters : (00:16) Fabian Cale (15:06) Gita Ramdharry (34:14) Mel Mandarakas
Rapporteur : Roberto Cannataro (01:11:30)

Plenary II Substance: Three disciplinary approaches to problem solving (chair: Mary Reilly, London)

Podium: Highlights from the working groups
Presenters : (02:00) Rafael Sivera (02:00), Maike Dohrn (13:20), Roberto Cannataro (23:12)
Comments: Pavel Seeman
(40:10) General discussion: key insights and learnings – and the open questions

Working Groups on Strategies: Creating synergies of three approaches

Cooperation: Establishing a « European CMT Research Association (ECRA)»
co-moderation : (00:15) Laurent Magy / (01:16) Simon Bull

Presenters : (02:16) Teresa Sevilla Mantecón (12:40) Lisa Reinecke (30:46) Tim VanGansewinkel
45:50 : Discussion
Rapporteur : Andrea Gangfuss

Working Groups on Strategies: Creating synergies of three approaches

Data management for CMT: Towards an Integrated European CMT Patient Registry
co-moderation : (01:36) Alessandra Bolino / (00:15) Marco van der Linden

Presenters : (03 :20) Simone Thiele (29:30) Teresinha Evangelista (46:44) Jean Christophe Antoine
56:20 Discussion
Rapporteur : Andrea Cortese

Working Groups on Strategies: Creating synergies of three approaches

Mobilizing the Patients: Scientists’, Clinicians’ and Therapists’ expectations and advice
co-moderation : Tanya Stojkovic / Inbal Ben David

Presenters : (00:15) Oana-Aurelia Vladacenco (21:40) Kleopas A. Kleopa (59:50) Nicolas Tricaud
Rapporteur : Signe Vaeth

Plenary III Strategies: Creating synergies of three approaches (president: Michaela Auer-Grumbach)

Podium: Reports from the working groups
- Presenters : (00:55) Andrea Gangfuss, (08:54) Andrea Cortese, (23:00) Signe Vaeth
Comments: An American Perspective, Katherine Forsey
Final plenary discussion

General Conclusions and Perspectives (1:13:50)

Vincent Timmerman: Take-aways of the Conference
Filippo Genovese: Award ceremony for the winner of the poster contest
Ingolf Pernice: Acknowledgements, perspectives and goodbye

INTERVIEWS POST-EVENT

The interviews present the different perspectives discussed at the conference and with the participants, having the experts interviewed by patient representatives.

Interview 1

Poster Contest Winners : Jihane Gadacha, Doctoral student & Nathalie Bernard-Marissal, Doctor

Interviewed by Stephan Züchner, Professor for Human Genetics and Neurology & Alexandre Méjat, International Affairs Officer, Scientific Department – AFM Téléthon