The CMT (also known as HMSN) was first described 140 years ago by French professor Jean-Martin Charcot, along with his student Pierre Marie de l’Hôpital de la Salpêtrière in Paris and Howard Henry Tooth.
Charcot Marie Tooth is a rare disease, but not much. It affects 1 person per 2500 (without considering the large number of cases not diagnosed) and is, among the so-called rare diseases, perhaps the most common.
Since its discovery, we have understood that there is not a single type of CMT; but there are many and very different indeed. We have not yet been able, however, to find a cure, or rather a treatment, for this pathology.
Rare diseases, because of their low numbers, are not in the interest of politicians and big Pharma which are unwilling to release funds for this research. It is necessary, therefore, to find new ways to give a new impetus to research on Charcot Marie Tooth. But how?
Patients invited CMT specialists to attend a conference
“Why can’t the initiative start with patients? ” asked Daniel Tenesse, President of ECMTF, “after all, they suffer from the disease and, if it comes, they will benefit from the cure”.
Becoming active in the field of research has always been a goal of the European CMT Federation that, founded in Venice in 2018 by courageous representatives of five organizations (including ours), was created to support the work of local associations CMT and to raise awareness of this disease among the populations of European countries.
The ECMT Federation has grown over time and today has more than 20 members from all over Europe, joined by associate members from Israel, China and the United States. His goals have also become increasingly ambitious, first and foremost to organize a conference at the initiative of patients.
An idea that became reality on 9-10 June 2023 in Paris with the 1st European Conference of CMT Specialists attended by more than 100 people from Europe, United States of America, Israel, Korea and Australia, including:
- more 60 leading researchers on the CMT as speakers
- 10 young scientists with posters about their projects
- about 20 representatives of the European Union and
- three representatives of the three largest American patient organisations
- about 10 representatives of companies interested in CMT who participated as “industrial partners”.
All together, in Paris, gathered in Conference talking about the future and possible collaboration between CMT researchers (through the use of new data sharing systems and the application of artificial intelligence) and not only, also about more operational issues.
The conference was divided into two parts:
- The first day was dedicated to science. In three different workshops scientists, doctors and other health professionals discussed the current state and future prospects of CMT research;
- The second day was dedicated to strategies. We discussed how to develop new ways to achieve a common goal together: to find the right therapies for the multiple forms of CMT, thus giving hope to patients.
We were there, with our representatives who followed step by step this event. It was a unique and exciting not only for its scientific part. Stay tuned and follow us on this blog and we will provide more detailed information‼️