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Buildingbridgesandbreakingbarriersinrareneuromusculardiseases 2
Specialisedgroup:MotorNeuronDiseases43HCPs
Buildingbridgesandbreakingbarriersinrareneuromusculardiseases 3
Motor Neuron Diseases Specialist Group
Leonard van den Berg (chair) Ludo van der Pol (vice-chair) Carlos Vrins (secretary)
Evy Reviers (ALS) Mencía de Lemus Belmonte (SMA)
ALS subgroup ± 26 HCPs
SMA subgroup ± 30 HCPs
Coordinators PatientRepresentatives
Buildingbridgesandbreakingbarriersinrareneuromusculardiseases
• Structure– Board– Meetings– Existingconsortia
• Prioritise– Guidelines– Trial(readiness)– Education
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Motor Neuron Diseases Specialist Group
Buildingbridgesandbreakingbarriersinrareneuromusculardiseases
SubgroupALSLeonardvandenBerg
• ERN ENCALSèTRICALS
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