21 December 2023

Dear EURO-NMD Healthcare Providers,

We are pleased to invite you to participate in the survey “Current screening and treatment to optimize bone strength in neuromuscular disorders: a survey among medical specialists”. This is part of the preparation for the upcoming 274th ENMC workshop in January 2024. We were encouraged by patients involved in EURO-NMD to organize a workshop on this topic based on their experience of suboptimal bone health care. They approached our team because of our recent review [1]. Background information on the topic is provided below.

Below you find the link to the survey (presented in Castor). We would like you to answer the questions as a representative of your centre. If someone else in your team is a better candidate to do this, please forward this email to him or her. We expect that it takes you approximately 10 to 15 minutes to complete. We encourage you to complete the survey by January 12th 2024.

If you have any questions please contact : nicol.voermans@radboudumc.nl 

[1] Bouman K, Dittrich ATM, Groothuis JT, van Engelen BGM, Janssen  MCH, Voermans NC, Draaisma JMT, Erasmus CE. Bone Quality in Patients with a Congenital Myopathy: A Scoping Review. J Neuromuscul Dis. 2023;10(1):1-13

The ERNs are co-funded by the
European Union (Health Programme and CEF)

EU Commission

“EURO-NMD is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Union (Health Programme and CEF).
For more information about the ERNs and the EU health strategy,
please visit ec.europa.eu/health/ern