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KDA News

European Neuromuscular Consortium (ENMC) SBMA Workshop

On October 20-22, 2023, in the Netherlands, 26 scientists from academia, healthcare, and industry representing 11 countries (Denmark, France, Germany, Israel, Italy, Portugal, Spain, Switzerland, United Kingdom, USA, and Japan) gathered with four patient representatives from AIMAK, KDUK, and KDA. This workshop, led by Maria Pennuto, Gianni SorarĂ¹, Linda Greensmith, and Pierre-Francois Pradat, focused on advancements in research and clinical practices related to Kennedy's Disease (KD), also known as Spinal and Bulbar Muscular Atrophy (SBMA).

The workshop aimed to consolidate knowledge and collaborations among experts and patient representatives, align on trial designs and outcome measures, and promote participative medicine, thereby enhancing the chances of developing effective treatments for SBMA.

Please follow this link for a preliminary report of this workshop.