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Online Work Group and Board Meetings Monday May 31st – Friday 4th June 2021

 AGENDA

European Reference Network for Rare Neuromuscular Diseases

Online Work Group and Board Meetings

Monday May 31st – Friday 4th June 2021

Please register before Thursday, May 27th

 

We invite all full members and Affiliated Partners of ERN Euro-NMD to participate in the board meeting, or have themselves represented. Further attendees are the representatives of the Patient Advisory Board and the members of the Executive committee.

Monday, May 31st    
 

15.00 – 16.50

Joint session!

Peripheral Nerve work group & Neurophysiology work group

led by Davide Pareyson &

Camiel Verhamme

click to view agenda

Please register before May 27th:

Click for access to this meeting

 

17.00 – 19.00

 

Education Board work group

led by Jean-Philippe Plançon

 

click to view agenda

Please register before May 27th:

Click for access to this meeting

 

Tuesday, June 1st    
15.00 – 16.50 Ethics board work group

led by Evy Reviers                                            

click to view agenda

Please register before May 27th:

Click for access to this meeting

17.00 – 19.00 Imaging work group

led by Pierre Carlier                                               

click to view agenda

Please register before May 27th:

Click for access to this meeting

 

Wednesday, June 2nd    
15.00 – 16.50 Neuromuscular pathology work group

led by Montse Olivé Plana

click to view agenda

Please register before May 27th

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17.00 – 19.00 Muscle work group

led by Marianne de Visser

click to view agenda

Please register before May 27th:

Click for access to this meeting

 

 

Thursday, June 3rd
15.00 – 16.50  

Genetics work group

led by Alessandra Ferlini                             

click to view agenda

Please register before May 27th:

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17.30 – 18.30 Motor Neuron work group

led by Leonard van den Berg

click to view agenda

Please register before May 27th:

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Friday, June 4th
12.00 – 13.50 Patient Advisory Board

led by François Lamy

Invitation only:

Please register before May 27th

15.00 – 16.50 Mitochondrial work group

led by Rita Horvath                                                 

click to view agenda

Please register before May 27th:

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17.00 – 19.30  Board meeting led by Teresinha Evangelista

For Board members and their representatives

please register before May 27th:

Click for access to this meeting

 

17.00 – 17.05 1.    Welcome
17.05 – 17.25

 

2.    The achievements of Euro-NMD

by Marianne de Visser  – Q&A 5’

 

17.25-17.45 3.    AMEQUIS: An integrated quality improvement system for ERN’s

the EU-project presented by Lilian van Tuyl (NIVEL) – Q&A 5’

 

17.45-18.05 4.    Covid 19-vaccination and neuromuscular patients

by Max Damien – Q&A 5’

 

18.05-18.20 5.    CPMS “the Italian model”

by Fernanda Fortunato – Q&A 5’

 

  18.25-18.45 6.    Patient Advisory Board

by François Lamy – Q&A 5’

 

  18.45-19.05 7.    Registries update

by Antonio Atalaia – Q&A 5’

 

  19.05-19.25 8.    Research survey

by Carla d’Angelo – Q&A 5’

 

19.25 – 19.30 9.    Photo Call & Farewell