Events
RSS feed5th Neuromuscular Translational Summer School – 10-14 July 2023 – Leiden, The Netherlands
Organized by Euro-NMD and TREAT-NMD networks, this summer school offers lectures concerning the management of acquired and genetic neuromuscular diseases, the different steps of drug development, assessment tools, communication and the role of the patients in each of these steps. It will take place on 10-14 July 2023 in Leiden, The Netherlands. Registration … [Read more]
Rare diseases: AFM-Telethon calls for the creation of a public fund to ensure access to treatment
To mark International Rare Disease Day on 28 February, AFM-Telethon is advocating for the creation of a public intervention and innovation fund in France for the treatment of ultra-rare diseases with no prospect of commercial profitability. The aim: to guarantee access to treatment for all. 95% of rare diseases have no treatment. And while innovative … [Read more]
A review of the year 2022 with the AFM-Téléthon
The year 2022 has just drawn to a close, carried by the slogan “We will not give up”, which has enabled AFM-Telethon to celebrate its greatest victories and to continue the fight for all those whose disease remains untreated. 2022 also saw new advances in research in several diseases, the organization of a major international … [Read more]
Téléthon 2022 : € 78 051 091. Thank you very much!
The Téléthon 30-hour-long broadcast ended with donations totaling 78 051 091 euros. From Guebwiller to Cassis, Dijon, Lorient and Cap-Ferret, millions of people came together again for the Téléthon, this unique celebration with its thousands of events. A vital support for the families and researchers, “these saving lives maniacs” as Kev Adams called them. But … [Read more]
ERN EURO-NMD webinar, Oct. 13th : Robert Pangalila (The Netherlands)
Quality of life in Neuromuscular Disease Thursday October 13th, 2022 – 16:00-17:00 (Paris time) Robert Pangalila (Rijndam Rehabilitation Clinic and Erasmus University Medical Centre, The Netherlands) Please register here to attend the webinar Webinar organised by EURO-NMD in collaboration with ERN-RND and EAN.
30 September: International Muscular Dystrophy Awareness Day
The 8th International Limb Girdle Muscular Dystrophy Awareness Day will take place on 30 September. Organised by the LGMD Awareness Foundation, the aim of this day is to draw attention each year to this group of rare neuromuscular diseases that impact on the lives of many people, children and adults, in all regions of the … [Read more]
10th edition of the “1000 researchers in schools” campaign – 7 Nov-3 Dec
The scientific campaign operation for secondary school students “1000 researchers in schools in France and abroad” is celebrating its 10th anniversary! It will take place between 7 November and 3 December in schools. These meetings between secondary school classes and scientists from laboratories at the cutting edge of medical research are a special opportunity to … [Read more]
One word to describe the congress “Myology 2022”
Intriguing, friendly, fast-paced, cross-disciplinary… it’s not easy to sum up the 7th edition of the Myology Congress organized by the AFM-Telethon in a single word. Discover the answers of the researchers who took up the challenge! Myology 2022 is over! During 4 days, researchers, clinicians and experts in myology were able to exchange on the … [Read more]
ERN EURO-NMD webinar, Sept. 22nd : Prof. Costanza Lamperti (Italy)
Mitochondrial Genetics Thursday September 22nd, 2022 – 16:00-17:00 (Paris time) Prof. Costanza Lamperti (lstituto Neurologico C.Besta, Milan, Italy) Please register here to attend the webinar Webinar organised by EURO-NMD in collaboration with ERN-RND and EAN.
World Duchenne Awareness Day: women speak out
September 7th is World Duchenne Muscular Dystrophy Awareness Day. It is an opportunity to raise awareness on this rare disease that affects 250,000 people worldwide. And if it is mostly boys who are affected, the disease also affects girls. To talk about it, this year, the theme chosen for the Awareness Day is “Women and … [Read more]
