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 Sadie Tyler-Sibbald

A Foundation Building Strength

A Foundation Building Strength is the only 501(c)3 organization solely dedicated to finding treatments for Nemaline Myopathy, while also providing ...

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Coalition to Cure Calpain 3

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 Calpaino...

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Cure CMD

Cure CMD’s mission is to advance research toward treatments for the congenital muscular dystrophies and improve the lives of those living wit...

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Cure Rare Disease

Cure Rare Disease focuses on the development of therapeutics to treat ultra-rare disease diseases.

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Cure VCP Disease, Inc.

Cure VCP Disease, Inc., is a patient advocacy organization dedicated to driving the development of a cure for valosin-containing protein (VCP) asso...

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Duchenne Data Foundation

The Duchenne Data Foundation (DDF) works in close collaboration with the World Duchenne Organization (WDO) to achieve the best possible outcomes fo...

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Duchenne Parent Project spain

Duchenne Parent Project Spain (DPPE) is a non-profit association created and directed by fathers and mothers of children with Duchenne Muscular Dys...

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Duchenne UK

Duchenne UK was founded by two mothers whose sons were diagnosed with Duchenne muscular dystrophy in 2011. Thanks to the army of healthcare profess...

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FSHD Society

The FSHD Society is the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), one of the m...

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GBS| CIDP Neuropatías Autoinmunes España

Dysimmune inflammatory neuropathies patient advocacy group based in Spain.

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Jain Foundation

The Jain Foundation’s mission is to cure muscular dystrophies caused by dysferlin protein deficiency. These dystrophies are collectively termed dys...

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Jett Foundation

Jett Foundation empowers people and families impacted by Duchenne muscular dystrophy through the development of transformative programming, educati...

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LGMD2i Research Fund

Our mission is to expedite the development of treatments and a cure for LGMD2I by supporting the most promising research projects and coordinating ...

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MTM-CNM Family Connection

MTM-CNM Family Connection, Inc is a non-profit charitable organization with a mission to connect families affected by Myotubular Myopathy (MTM) and...

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Muscular Dystrophy Organization Nepal

A grass roots organization registered for the quality of life with muscular dystrophy, health care concerned, looking forward working with other I...

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Muscular Dystrophy UK

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 adv...

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Myotubular Trust

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...

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Patients' Association for Dysferlinopathy Japan

Patients' Association for Dysferlinopathy Japan was established with the aim of communicating with patients suffering from muscle diseases caus...

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SMA Europe

SMA Europe is a non-profit umbrella organisation of spinal muscular atrophy (SMA) patient organisations from across Europe. We work together to cre...

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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 m...

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Team Titin

Team Titin, Inc.'s mission is to serve those living with, caring for, or researching titin (TTN) related muscle and heart disorders.

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The Neuromuscular Disorders Association of Turkey (KASDER)

To identify the causes of neuromuscular diseases and conduct awareness-raising activities on diagnosis and treatment methods, and to work on preven...

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World Duchenne Organization

Mission The World Duchenne Organization is a global umbrella organization of national patient organizations. We are dedicated to finding a cure an...

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