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Primary Mitochondrial Myopathies Thursday May 12th, 2022 – 16:00-17:00 (Paris time) Prof. Michelangelo Mancuso (Neurologist at the Neurological Clinic of Cisanello Hospital and Associate Professor of Neurology at the University of Pisa, Italy) Webinar organised by EURO-NMD in collaboration with ERN-RND and…
You can now find the program of the two major scientific congresses organized by the AFM-Téléthon next September in Nice on the dedicated site: Myology 2022, which will be held from September 12 to 15, will bring together more than…
Thanks to the mobilization of donors, volunteers, families, partners, all united during this great celebration of solidarity for the benefit of the fight against rare diseases, the final collection of the 2021 Telethon amounts to €85,933,166. To all, thank you!…
Louison Lallemant is a doctoral student in the group of Mario Gomes-Pereira and Geneviève Gourdon within the REDs team led by Denis Furling and Geneviève Gourdon, at the Institute’s Myology Centre for Research. She has just won the Public Prize…
The Institute of Myology and AFM-Telethon have launched MYaEX, a large national survey regarding persons with myasthenia gravis, congenital myasthenic syndrome or Lambert Eaton myasthenic syndrome. The main objective of this study is to help to understand what determines the practice…
Targeted Therapies for Leigh Syndrome: Systematic Review and Steps Towards a “Treatabolome” Thursday February 24th, 2022 – 16:00-17:00 (Paris time) Prof Rita Horvath (University of Cambridge, Cambridge Rare Diseases Centre, UK) “Mitochondrial Disorders Thematic Month” Webinar organised by EURO-NMD.
The Denis Furling* team (Paris, France), in collaboration with the Nicolas Sergeant** team (Lille, France), has developed and tested a new approach to gene therapy, a so-called “decoy” approach, for Steinert disease or myotonic dystrophy type 1 (DM1). The strategy…
Primary mitochondrial myopathies Thursday February 17th, 2022 – 16:00-17:00 (Paris time) Prof Michelangelo Mancuso (University of Pisa & AOUP, Italy) “Mitochondrial Disorders Thematic Month” Webinar organised by EURO-NMD
The rare neuromuscular diseases are characterised, in particular, by a progressive loss of muscle strength. As a result, getting up, sitting down or going up stairs can quickly become difficult. This is why the Institute of Myology, a centre of…
The 26th “Journées of the Francophone Society of the Peripheral Nerve” took place on January 21 & 22, 2022 at the New Cap Event Center in Paris. They brought together 240 participants, health professionals, clinicians, researchers on cross-cutting themes from…
Myobank-AFM, the Research Tissue Bank of the Institute of Myology, is a non-profit service involved in the collection, preparation, storage and distribution of human tissue samples, primarily from people with neuromuscular or rare diseases but also healthy subjects. This center…
An introduction into mitochondrial diseases in adulthood Thursday February 3rd, 2022 – 16:00-17:00 (Paris time) Pr Cornelia Kornblum (Bonn University/Universitary Clinic of Bonn, Germany) “Mitochondrial Disorders Thematic Month” Webinar organised by EURO-NMD.
Charles Frison-Roche has received the Oral Research Communication Prize, awarded by the French Myology Society (SFM). He is a PhD student in the REDs team headed by Denis Furling and Geneviève Gourdon, at the Myology Research Centre and the Institute…
The Institute of Myology Located in Paris, at Pitié-Salpêtrière Hospital, the largest public hospital in Europe, the Institute of Myology was created in 1996 by AFM-Téléthon, a patient association. The Institute’s goal: promoting the field of Myology and forming it…
On 16 December 2021, the UN adopted the first-ever UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families.” A huge recognition for families with rare diseases. The resolution increases visibility for the 300…
Dear patients and their families, Dear donors, Dear partners, We wish you a very happy New Year and, especially, very good health. We hope the New Year gives you the energy needed to help you accomplish projects that are close…
Save the date! The MYOLOGY 2022 international congress, organized by the AFM-Téléthon, will be held from September 12 to 15, 2022 in Nice and will be devoted to science and research on muscle, associated disorders and dedicated therapeutic innovations. It will…
Palliative care in Neuromuscular Disorders Thursday December 16th, 2021 – 4pm-5pm (Paris time) Prof. Tracey Willis (Robert Jones and Agnes Hunt Orthopaedic and District Hospital NHS Trust, Oswestry, UK; Birmingham Children’s Hospital NHS Foundation Trust, UK) & Prof. Derek Willis…
In a few days, the 2021 Telethon will kick off! Soprano, the mentor of this edition, will be in the spotlight alongside the AFM-Telethon, families and thousands of volunteers. Everyone will do their utmost to raise the counter during the…
The 18th ‘Journées de la Société Française de Myologie’ will be held from November 24 to 26, 2021 in Saint-Etienne, France. This meeting is a privileged moment for exchanges between clinicians and fundamental researchers around the latest discoveries in the…