European Neuromuscular Centre
About
ENMC
We are associate partners of the European Neuromuscular Centre (ENMC), an organisation founded in 1992 by a group of European patient associations to bring leading researchers and clinicians from all over the world together. Today, it is an active network of over 2,500 researchers, clinicians and patients.
The ENMC organises and finances workshops on an application basis. Topics of the workshops vary from outcome measures, clinical trial readiness and preclinical studies, to diagnosis and care for all neuromuscular diseases. Active participation by people living with a neuromuscular disease gives them a chance to discuss their needs with scientists and clinicians. The community is informed of workshop outcomes via publications in scientific journals, the ENMC website and through social media.
As an Associate Partner organisation we:
- help in encouraging and facilitating communication and collaboration in the field of SMA research, with the aim of improving diagnosis, finding effective treatments and optimising standards of care to improve the quality of life of people affected by SMA.
- work with the ENMC to deliver its mission through co-sponsoring and contributing the patient-perspective to many ENMC workshops on SMA, but also on other topics.
- will, in the near future, contribute to thematic workshops
- will, in time, become part of sub-committees to work together with the ENMC on strategic innovations and new projects.
Workshops
Workshops we have played an active role in
- 2022 - 254th ENMC International Workshop on the formation of a European network to initiate a European data collection, along with development and sharing of treatment guidelines for adult SMA patients. 28 - 30 January 2022, Hoofddorp, the Netherlands.
- 2021 - 264th ENMC international workshop on multi-system involvement in spinal muscular atrophy. 19–21 November 2021, Hoofddorp, The Netherlands.
- 2019 - 244th ENMC international workshop on newborn screening in spinal muscular atrophy. 10-12 May 2019, Hoofddorp, The Netherlands
- 2018 - 235th ENMC international workshop on the position of neuromuscular patients in shared decision making. 19-20 January 2018, Milan, Italy.
- 2016 - 218th ENMC International Workshop on revisiting the consensus on standards of care in SMA. 19–12 February 2016, Naarden, The Netherlands.
- 2014 - 209th ENMC International Workshop: outcome measures and clinical trial readiness in spinal muscular atrophy. 7-9 November 2014, Heemskerk, The Netherlands.