Patient Advocacy Group Directory

Looking beyond the scientific and educational needs of healthcare professionals, WMS aims to play an important role with regards to strengthening patient advocacy. This is accomplished by taking a variety of proactive steps to work together with patient advocate groups.

We extend a warm invitation to neuromuscular patient advocacy groups from around the world to collaborate with the World Muscle Society (WMS) in a collective effort to strengthen our community. At WMS, we are committed to building a robust network that fosters collaboration, information sharing, and support among organisations dedicated to neuromuscular health.

To achieve this goal, we are in the process of compiling a comprehensive directory of Patient Advocacy Groups. If you wish to be included in our directory, kindly fill out a form. If you are not already a WMS member, we encourage you to create a free account.

Please note that this directory is intended solely for informational purposes, and the WMS does not assume responsibility for the content of other organisations' websites. Together, we can create a powerful platform for advocacy and support within the neuromuscular community.

If you have any queries, please contact us.

Duchenne Data Foundation

The Duchenne Data Foundation (DDF) works in close collaboration with the World Duchenne Organization (WDO) to achieve the best possible outcomes for the global dystrophinopathy community. This incl...

Netherlands

Dutch Neuromuscular Patient Association

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, inc...

Netherlands

Stichting Voor Sara

The Dutch-based Voor Sara Foundation aims to promote and accelerate the development of treatments and cures for Lama2 CMD. They bring the leading medical researchers and doctors as well as patients...

Netherlands

World Duchenne Organization

Mission The World Duchenne Organization is a global umbrella organization of national patient organizations. We are dedicated to finding a cure and viable treatments for DMD, to promoting good sta...

Netherlands

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