Two years of European CMT Federation, the Consortium of CMT European Associations

CMT Federation riunione

Two years ago we proudly announced the birth of the European CMT Federation: the voluntary non-profit federation made of national organizations to support people with Charcot-Marie-Tooth.

The idea of forming a consortium of CMT Associations in Europe (able to cooperate with associations around the world) was born in 2016 and presented under the name “TOGETHER WE CAN” at the Medical Congress of the ACMT Network in Venice. An ambitious project wanted, and then carried out, by the associations of France (CMT France), Belgium (Spierziekten Vlaanderen), United Kingdom (Charcot-Marie-Tooth UK), Holland (Spierziekten Nederland), Italy (ACMT-Rete and our Mitofusin Project 2).

The project started with the aim of being able to achieve more effective action for all the CMT patients in Europe (over 200,000 people) and better cooperation with associations worldwide. It still remains that one. Within the Federation, our association plays the role of European reference for all types of CMT due to mutation of Mitofusin 2 (CMT2A, CMT5 and CMT6).

Since its foundation in 2018, the ECMT Federation, initially composed by the six founding members mentioned above, has continued to widen by welcoming several other associations. Many other associations have joined this initiative, overcoming national barriers to enlarge this ambitious project which is, today, a well-known and consolidated reality. 

The CMT Romania association (Asociația CMT România), the Italian AICMT Onlus and CMT Austria were welcomed as effective members during the first general assembly in 2019; while in 2020 the Federation welcomed the new Asociația Neuro Move CMT (Romania) as effective member and the associations ASEM (Spain), CMT-NET (Germany), CMT-ISRAEL (Israel) and CMT China (China) as associate members. It is a news of these days that the Ganglion Skopje Association (Macedonia) just joined the Consortium! CMTA and HNF collaborate instead as partners of the Federation in the USA.

That’s great, as we are numerous: our community has grown in a short time (and we hope it will continue!”, pointed Daniel Tanesse, President of the Federation, during the second general assembly held online because of the Covid-19 emergency. Indeed, it was surprising to see how many people connected, but on the other hand TOGETHER WE ARE STRONGER was the slogan of the Federation from the beginning and it still continues to be.

The Federation gathers once a year and during the last meeting all the works in progress (most of which pointing to spread awareness of Charcot Marie Tooth around world and support scientific research against the disease) were illustrated. All of them are really interesting initiatives, so we recommend you to deepen by linking to the site completely renovated and much more complete of the ECMT Federation.

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