Events
RSS feedInternational Myotonic Dystrophy Awareness Day on September 15
15 September 2023 marks the third International Myotonic Dystrophy Awareness Day, aimed at highlighting these rare diseases in order to improve diagnosis, care and support, as well as advancing research. The REDs team of the Myology Centre for Research of the Institute of Myology led by Geneviève Gourdon and Denis Furling, which also includes Guillaume … [Read more]
Vianney, mentor of Telethon 2023, on 8 & 9 December
After Matt Pokora, Soprano and Kev Adams, it’s singer and composer Vianney’s turn to join forces with researchers, families and thousands of volunteers across France in the fight against rare diseases on 8 and 9 December 2023. The ambassador families for the next Telethon reflect the victories won thanks to you, against diseases that were once … [Read more]
7 September is International Duchenne Muscular Dystrophy Awareness Day
The 10th World Duchenne Muscular Dystrophy Day, on 7 September, is a call to action to break down the physical, social and healthcare barriers faced by the 250,000 people worldwide affected by this disease. With the theme “Duchenne: breaking down the barriers”, the day dedicated to raising awareness of Duchenne muscular dystrophy aims to encourage … [Read more]
Neuropathies Rehabilitation – ERN-NMD Summer School – 18-21 Sept 2023
The Neuropathies Rehabilitation Summer School will take place from September 18-21, 2023 in Roma, Italy. Held under the auspices of ERN EURO-NMD, this summer school aims to disseminate knowledge on current and future modalities of rehabilitation in rare and complex peripheral neuropathies and assessment of evidences, it is designed for physiotherapists, occupational therapists, clinicians with … [Read more]
MYOLOGY 2024 will be held in Paris from 22-25 April 2024
Myology 2024, the 8th International Myology Congress, will be held in Paris from 22 to 25 April 2024. This 8th edition of the international congress dedicated to neuromuscular science is expected to bring together around 1,000 delegates from all over the world. With the Olympic Games just a few weeks away, we will have more … [Read more]
18th meeting of the East Parisian MNM Reference Centre: PMA and parenthood – 23 June
The Reference Centre for Neuromuscular Diseases of Eastern Paris is organising its 18th meeting on the theme: Medically Assisted Reproduction and Parenthood – Clinical, Legal and Cultural Aspects. The meeting will take place on Friday 23 June 2023 – 9:00 am – 4:30 pm in the amphitheatre of the Institute of Myology. This event is … [Read more]
5th 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]
Muscle, a major public health issue
Because muscles are a major public health issue, AFM-Telethon and the Institute of Myology, an international center of expertise on muscles and their diseases, are carrying out a project for a Myology Foundation. In addition, to raise awareness on myology among the public, they are launching two events dedicated to this public health issue in … [Read more]
First « Muscle Conferences » on 1 June at the Economic, Social and Environmental Council
The Institute of Myology and AFM-Telethon organised a press conference on 7 February to promote muscle as a public health issue by announcing the project to create a Foundation of Myology and two dedicated events to raise awareness of this issue: Muscle Week and the “First « Muscle Conferences » on 1 June at the Economic, Social and … [Read more]
