The Dutch Neuromuscular Patient Association (Spierziekten Nederland) was founded in 1967. Since then we have been advocating for all people with a neuromuscular disease in the Netherlands, including Myotonic Dystrophy. We realise our goals thanks to our 8,500 members and our many committed volunteers. We greatly appreciate our strong collaboration with Prinses Beatrix Spierfonds and Spieren voor Spieren (our funding partners), researchers and medical experts, including neurologists, physiatrists, physiotherapists, occupational therapists and dietitians.
We provide people with a neuromuscular disease, their relatives and healthcare providers with up-to-date and reliable knowledge and information via our website, magazine, newsletters, brochures and leaflets, online courses, webcasts and social media and events and (digital) meetings. We organise more than 50 meetings annually including a Neuromuscular Disease Conference, where participants receive the latest scientific news and get to know the experts as well as each other. We also enable online exchange of experiences on our own digital platform Myocafé.
Advocacy:
To achieve this, we connect with an extensive network of doctors, researchers, expertise and rehabilitation centers, healthcare insurers, pharmaceutical companies and governmental institutions. Our organisation works with approximately 150 active volunteers and receives substantive intellectual support from approximately 50 medical advisors. Our board partly consists of 'experts by experience' and we have a national office in Baarn, with 25 skilled employees.
