Coordinator's Message and Season's Greetings

Despite the extraordinary circumstances of 2020, Euro-NMD has consolidated as a network for neuromuscular disorders. It started the year with 61 full members (HCPs) and welcomed 9 affiliated partners in 2020. Moreover, we are currently evaluating 26 new full membership applications, a process that will be finalised by June 2021. Regretfully, the future of the ERNs institutional collaboration with the UK centres is at risk, following the United Kingdom's withdrawal from the EU and the end of the transition period on the 31st December 2020. We heartfully thank our UK Colleagues for their work and commitment that has contributed to our ERN's success. Despite this, we will always welcome their contribution to the neuromuscular field's scientific and clinical advancement.

In the current year, we witnessed changes in the Educational Board and the Pathology Working Group leads. We send warm thanks to the ceasing Chairs, Andoni Urtizberea and Bjarne Udd, for their extraordinary achievements and welcome Jean-Phillipe Plançon and Montse Olivé to the difficult task of keeping up with their work, a challenge that they have gracefully accepted.

The Coordination Team wishes all of you a Merry Christmas and a Happy New year of 2021.

The ERICA Project: joining forces to integrate research and innovation capacity across all 24 European Reference Networks

The European Rare disease research Coordination and support Action (ERICA) Project received a positive evaluation for a H2020 grant to establish a structural framework in support of the research activities of the ERNs, including ERN Euro-NMD. ERICA will strengthen research and innovation capacity by integration of ERN research activities, outreach to European research infrastructures to synergistically increase impact and Innovation. This will result in safe, accessible and efficient access of therapies for the benefit of patients suffering from rare diseases and Conditions.

Rare diseases are defined as diseases that affect not more than 1 person per 2000 in the European population. However, while individual rare diseases affect only a small percentage of the population, they collectively affect up to 30 million people in the EU. With the objective to facilitate access to high quality cross-border healthcare and promote and foster cooperation on rare disease healthcare between member states, the 24 European Reference Networks (ERN) were established by the European Commission last 2017. The ERICA Project builds on the strenght of these individual ERNs by promoting inter-ERN research activities and by establishing firm collaborative ties with existing European and international infrastructures and consortia involved in rare disease research and innovation.

The ERICA Consortium consists of 29 partners, amongst which all 24 ERNs, EURORDIS, the EJP RD, Orphanet, Mapi Trust Research, and EATRIS. The ERICA Project is coordinated by Alberto Pereira (ENDO-ERN coordinator, Leiden University Medical Center, the NL). Looking forward to develop this project together!