MD Netherlands was founded in March 2019 after MD was diagnosed in one of our families. We want to bring together dedicated professionals, enthusiastic volunteers, and our partners to achieve our mission. As of 2025 we are working together with multiple countries and have renamed the foundation MD Europe.
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We are driven by amazement that this major, serious disease is so little known. But also by the optimism of recent medical breakthroughs. Those developments make it possible, in the coming years, to make a life-changing difference for a great many people. Our mission is therefore for this to be the last generation with MD.
What’s needed for this now is: More awareness for MD, More research, and More entrepreneurship and collaboration. The 3 pillars of MD Europe.
Read the personal story of our founder Jorg van Gent.
Jorg’s Personal story
MD Europe’s ambition is to create a broad organization of dedicated pro bono professionals and enthusiastic volunteers who want to commit themselves to achieving our mission. We complement existing activities.
The foundation was established with a three-person board. Board members are appointed for a term of five years and may be reappointed twice. The board serves without pay. MD Europe runs on the tireless efforts of volunteers. The ambition is to formalize this in the future in the form of a professional volunteer organization.
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MD Europe is recognized by the Dutch Tax Authority as an ANBI (Public Benefit Organization), which means donations can be deducted from income tax (or corporate tax for businesses).
MD Europe is a member of Goeden Doelen Nederland, the trade association for recognized charities based in the Netherlands.
MD Europe has a large and broad network, giving it access to all relevant stakeholders: from medical specialists and scientists to the patient community and associations, as well as drug developers. We work closely with (inter)national partners such as the Prinses Beatrix Spierfonds and the Myotonic Dystrophy Foundation (US)
We complement existing activities. This means we do not focus on providing patient information like for example Spierziekten Nederland. Our initiatives go beyond supporting scientific research, and are therefore complementary to the activities of other foundations and partners.
We want to bring together dedicated professionals, enthusiastic volunteers, and our partners to achieve our mission. Read more about this in our annual reports and policy plan.
Together, we stand up against MD, the least known yet most common muscle disease.
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