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 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 |