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.
A Foundation Building Strength is the only 501(c)3 organization solely dedicated to finding treatments for Nemaline Myopathy, while also providing support and resources to the NM community. Nemali...
United States
Coalition to Cure Calpain 3 (C3) has a pinpoint focus: to drive a cure for limb-girdle muscular dystrophy type 2A (LGMD2A/R1), also called Calpainopathy. For the last decade, C3 has been the U.S.-b...
United States
Cure CMD’s mission is to advance research toward treatments for the congenital muscular dystrophies and improve the lives of those living with CMD through engagement and support of our commun...
United States
Cure Rare Disease focuses on the development of therapeutics to treat ultra-rare disease diseases.
United States
Cure VCP Disease, Inc., is a patient advocacy organization dedicated to driving the development of a cure for valosin-containing protein (VCP) associated multisystem proteinopathy (MSP), also known...
United States
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
Duchenne Parent Project Spain (DPPE) is a non-profit association created and directed by fathers and mothers of children with Duchenne Muscular Dystrophy (DMD) and Becker (BMD) Mission We work to f...
Spain
Duchenne UK was founded by two mothers whose sons were diagnosed with Duchenne muscular dystrophy in 2011. Thanks to the army of healthcare professionals, scientists, drug developers and families w...
United Kingdom
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
The FSHD Society is the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy. We have...
United States
Dysimmune inflammatory neuropathies patient advocacy group based in Spain.
Spain
The Jain Foundation’s mission is to cure muscular dystrophies caused by dysferlin protein deficiency. These dystrophies are collectively termed dysferlinopathy, but are also referred to as LGMD2B, ...
United States
Jett Foundation empowers people and families impacted by Duchenne muscular dystrophy through the development of transformative programming, educational opportunities, and ongoing support for every ...
United States
LGMD Awareness Foundation, Inc. is a 501(c)(3) non-profit advocacy organization dedicated to globally raising awareness of the rare neuromuscular diseases known as limb-girdle muscular dystrophy (L...
United States
Our mission is to expedite the development of treatments and a cure for LGMD2I by supporting the most promising research projects and coordinating and managing the scientific process. To expedite t...
United States
Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and related neuromuscular diseases. For over 70 yea...
United States
MTM-CNM Family Connection, Inc is a non-profit charitable organization with a mission to connect families affected by Myotubular Myopathy (MTM) and/or Centronuclear Myopathy (CNM) to resources, res...
United States
A grass roots organization registered for the quality of life with muscular dystrophy, health care concerned, looking forward working with other International MD organizations. We believe that th...
Nepal
We’re the leading charity for over 110,000 people in the UK living with one of over 60 muscle wasting and weakening conditions. We share expert advice and support to people living with muscle wasti...
United Kingdom
Myotubular Trust was set up in 2006 to become a respected funder of world-class peer reviewed medical research, in order to contribute to finding a treatment for myotubular and centronuclear myopat...
United Kingdom
Patients' Association for Dysferlinopathy Japan was established with the aim of communicating with patients suffering from muscle diseases caused by Dysferlin gene mutations and working with re...
Japan
SMA Europe is a non-profit umbrella organisation of spinal muscular atrophy (SMA) patient organisations from across Europe. We work together to create a better world for all those living with SMA. ...
Germany
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
Target ALS is a medical research foundation breaking down barriers to Amyotrophic Lateral Sclerosis (ALS) research to find effective treatments. Since 2013, Target ALS has revolutionized ALS resear...
United States
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