31 May 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 | |||
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15.00 – 16.50 |
Joint session!
Peripheral Nerve work group & Neurophysiology work group led by Davide Pareyson & Camiel Verhamme Please register before May 27th: |
17.00 – 19.00 |
Education Board work group led by Jean-Philippe Plançon
Please register before May 27th: Click for access to this meeting
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| Tuesday, June 1st | |||
| 15.00 – 16.50 | Ethics board work group
led by Evy Reviers Please register before May 27th: |
17.00 – 19.00 | Imaging work group
led by Pierre Carlier Please register before May 27th: Click for access to this meeting
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| Wednesday, June 2nd | |||
| 15.00 – 16.50 | Neuromuscular pathology work group
led by Montse Olivé Plana Please register before May 27th Click for access to this meeting
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17.00 – 19.00 | Muscle work group
led by Marianne de Visser Please register before May 27th: Click for access to this meeting
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| Thursday, June 3rd | |||
| 15.00 – 16.50 |
Genetics work group led by Alessandra Ferlini Please register before May 27th: |
17.30 – 18.30 | Motor Neuron work group
led by Leonard van den Berg Please register before May 27th: |
| 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 Please register before May 27th: |
| 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
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| 17.00 – 17.05 | 1. Welcome | ||
| 17.05 – 17.25
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2. The achievements of Euro-NMD
by Marianne de Visser – Q&A 5’
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| 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’
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| 17.45-18.05 | 4. Covid 19-vaccination and neuromuscular patients
by Max Damien – Q&A 5’
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| 18.05-18.20 | 5. CPMS “the Italian model”
by Fernanda Fortunato – Q&A 5’
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| 18.25-18.45 | 6. Patient Advisory Board
by François Lamy – Q&A 5’
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| 18.45-19.05 | 7. Registries update
by Antonio Atalaia – Q&A 5’
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| 19.05-19.25 | 8. Research survey
by Carla d’Angelo – Q&A 5’
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| 19.25 – 19.30 | 9. Photo Call & Farewell | ||
