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North America
Cure Duchenne
Based out of California, Cure Duchenne has been providing transparent, community focused information about Muscular Dystrophy including cutting-edge research and informational workshops since its founding in 2003. Cure Duchenne remains committed to fighting Duchenne from every possible angle with a patient/family first approach.
Akari Foundation
Founded with outreach and education in mind, the Akari Foundation serves to help Spanish and Hispanic communities. With global outreach, the Akari Foundation provides Spanish based resources, education, and advocacy for the Muscular Dystrophy community. Providing Hispanic families with the support needed to fight Muscular Dystrophy.
Defeat Duchenne Canada
Defeat Duchenne Canada, founded in 1995 by London-Ontario father John Davidson, is the country’s only national charity dedicated to eradicating Duchenne muscular dystrophy. They lead and fund cutting-edge research, unite patient families, clinicians and scientists, and advocate for timely access to emerging treatments and clinical trials. Through education on the latest standards of care, family support initiatives and a relentless pursuit of a cure, their mission is to ensure every Canadian affected by Duchenne can live a longer, more active life.
Kindness Over Muscular Dystrophy
Kindness Over Muscular Dystrophy (KOMD) is a 501(c)(3) nonprofit dedicated to supporting Duchenne muscular dystrophy research, advocacy, and assistance for affected families based out of Connecticut. Inspired by the founder's own positive experience with a groundbreaking gene therapy trial, the organization is committed to advancing treatments and providing hope. Since its founding, Kindness Over Muscular Dystrophy has raised over $2.5 million for Duchenne causes, beginning with $800,000 raised for other nonprofits before expanding its mission into an independent charitable foundation.
Coming Together For a Cure (CTFAC)
Coming Together for a Cure (CTFAC) is a nonprofit organization dedicated to advancing adult stem cell therapy as a standard of care for Duchenne Muscular Dystrophy (DMD) and other rare, chronic, and incurable diseases. What started as a family fundraiser after in 2008 after co-founder Ryan became the first person with DMD to benefit from stem cell therapy, CTFAC has quickly evolved into a global advocacy and education effort. With a mission to provide renewed hope through support, education, and access to life-changing therapies, CTFAC raises awareness, funds research, and connects families worldwide to innovative treatment options.
Jett Foundation
Jett Foundation was founded in 2001 by Christine and Stephen McSherry after their five-year-old son, Jett, was diagnosed with Duchenne muscular dystrophy. What began as a mission to fund a cure has grown into a national nonprofit that has raised over $16 million for Duchenne research and expanded its focus to include life-changing direct service programs and education. Today, Jett Foundation empowers families impacted by Duchenne and other neuromuscular disorders through innovative programs like Camp Promise and educational resources that offer critical support—regardless of location, finances, or ability.
The Muscular Dystrophy Family Foundation (MDFF)
Since 1958, the Muscular Dystrophy Family Foundation (MDFF) has supported individuals and families across Indiana living with neuromuscular diseases. Through advocacy, education, and life-changing resources, MDFF works to improve quality of life, mobility, and independence. The foundation provides essential equipment such as wheelchairs, van lifts, home ramps, hospital beds, and bathroom modifications—helping families navigate daily challenges with greater ease and dignity.
Walking Strong
Walking Strong empowers individuals and families affected by Duchenne Muscular Dystrophy through direct support, mental health resources, community experiences, and research funding. Their Assistance Program helps cover vital needs like medical equipment, service dogs, and accessible vehicles. The free Duchenne Mindset Coach program provides crucial mental health support to patients, caregivers, and siblings. Walking Strong also enriches lives through memorable experiences—from sports outings to supporting the LASC Power Soccer Team—fostering joy and connection. In addition, they fund cutting-edge research at UCLA’s Center for Duchenne Muscular Dystrophy, driving innovation in care and treatment.
Jar of Hope
JAR of Hope is dedicated to finding a cure for Duchenne Muscular Dystrophy while supporting affected families every step of the way. Through organized fundraising events and generous donor support, they fund leading-edge research, including clinical trials in partnership with the University of Florida College of Medicine and RESTEM LLC. With a relentless commitment to progress, JAR of Hope works to turn the dream of a cure into a reality—because for families facing Duchenne, every day and every dollar counts.
Europe
Muscular Dystrophy UK
With over 110,000 members, Muscular Dystrophy UK offers a hub of support for the MD community. From literature and helpful resources for the newly diagnosed, to direct lines to clinical research so your family always knows what options are available, Muscular Dystrophy UK stands committed to their mission of fighting Muscular Dystrophy.
Muscular Dystrophy Ireland
The Muscular Dystrophy Society of Ireland (MDI) has stood as a nationwide support network for families affected by muscular dystrophy since their founding in 1972. Created by Galway parents, today, with over 760 members and branches throughout Ireland, MDI employs staff who deliver a comprehensive range of services—Family Support, Information, Respite and Home Support, Accessible Transport, Youth Services (camps and clubs) and Counseling.
The World Duchenne Organization
The World Duchenne Organization (WDO) serves as a global umbrella of multiple national patient organizations. The seek to strengthen community bonds across the world to ensure no child is left behind. They stand committed to starting initiatives at the patient level first, prioritizing diagnosed individuals and their families as the heart of their missions.
Action Duchenne
Founded in 2001, based out of England, Action Duchenne is dedicated to supporting individuals and families living with Duchenne muscular dystrophy. Envisioning a world where lives are no longer limited by Duchenne, they fund innovative research, host annual International Duchenne Conferences to connect families with leading experts, and provide education on care standards and emerging treatments. They also advocate within healthcare, social services, and industry to ensure timely access to therapies, while developing programs and services based on the needs of the community. Working alongside families, Action Duchenne provides trusted resources, support networks, and opportunities to improve quality of life.
French Muscular Dystrophy Association (AFM-Téléthon)
AFM-Téléthon, the French Muscular Dystrophy Association, is a patient-led organization dedicated to conquering rare genetic neuromuscular diseases. Founded by patients and families determined to cure conditions once deemed incurable, AFM-Telethon is known for its groundbreaking Telethon fundraising event, which brought rare diseases into the spotlight and spurred major genetic, medical, and social advances. Guided by its core missions—Cure, Care, and Communicate—the organization pioneers research, advocates for patients’ rights, and provides vital support to families, driving innovation to improve the lives of those affected by progressive neuromuscular diseases.
Muscular Dystrophy Network (MD-NET)
The Muscular Dystrophy Network (MD-NET) is a Germany-wide consortium founded in 2003 and funded by the Federal Ministry of Education and Research (BMBF) to advance research, diagnostics, and clinical care for neuromuscular diseases such as muscular dystrophies, spinal muscular atrophies (SMA), and hereditary neuropathies (HMSN/CMT). Established as a non-profit in 2006, MD-NET is Germany’s partner in TREAT-NMD, leading initiatives for harmonized patient registries, biobanks, and clinical trial coordination across Europe. Based at the Friedrich Baur Institute, MD-NET connects researchers, clinicians, and patient organizations, translating discoveries into improved diagnostics, therapies, and standards of care.
Deutsche Gesellschaft für Muskelkranke (DGM)
With around 10,000 members, the German Society for Muscular Diseases (DGM) is the largest and oldest self-help organization for people with neuromuscular diseases in Germany. Founded in 1965, DGM focuses on advancing research, raising public awareness, and supporting those affected and their families in daily life. The organization advocates for inclusion, self-determination, and health literacy while providing advice, information, and a network for individuals facing one of the 800 known, often rare and incurable, neuromuscular diseases.
MDA Hellas
MDA Hellas, founded in 2000, is a Greek nonprofit organization dedicated to improving the quality of life for people with neuromuscular diseases. With 1,500 registered members, it provides psychological and social support, essential equipment, and infrastructure to ensure equal opportunities in all areas of life. The organization has established multiple Special Units for Neuromuscular Diseases in major public hospitals across Greece and opened the “MDA Hellas House,” a center offering palliative care, therapeutic programs, and independent living support. Over the years, MDA Hellas has provided vital equipment and home accessibility solutions, and it continues to expand its services with the support of the scientific community, sponsors, and volunteers.
Duchenne Parent Project Netherlands
The Duchenne Parent Project funds innovative research aimed at developing treatments and therapies that slow the progression of Duchenne Muscular Dystrophy, helping preserve muscle function and heart health. In addition to supporting groundbreaking studies, the organization hosts an annual conference for parents, medical professionals, and caregivers to share the latest advancements in research and care, while providing opportunities for connection and support for families and children affected by Duchenne.
Duchenne Parent Project Belgium
The association is an independent group of parents and family members of children with Duchenne muscular dystrophy, focused on advancing research, improving care, and advocating for patient rights. Its work includes funding research, raising awareness, sharing global updates, and supporting families. Collaborating with the World Duchenne Organisation (WDO), University Hospital Leuven, and partners across Belgium and the Netherlands, it also represents Duchenne patients through memberships in RaDiOrg, Spierziekten Vlaanderen, and the Flemish Patient Platform.
Duchenne Parent Project Italy
Parent Project is an association of patients and parents of children with Duchenne and Becker muscular dystrophy, dedicated since 1996 to improving treatment, quality of life, and future prospects through research, education, and advocacy. Founded by a group of parents determined in Italy to create better opportunities and mutual support, the organization has grown into a community of around 20,000 families, volunteers, clinicians, researchers, and supporters. By building strong collaborations between researchers, patient groups, and regulatory agencies, Parent Project continues to drive progress and innovation in the fight against these rare diseases.
Duchenne Hungary
Duchenne Hungary focuses on improving diagnostics and therapeutic care for children with Duchenne muscular dystrophy, supporting access to the latest treatment methods and rehabilitation services. The organization provides financial aid for medical treatments, mobility aids, and rehabilitation camps, while also assisting families facing financial hardship. It promotes knowledge sharing through events, training, and awareness campaigns, maintains partnerships with international organizations, and supports research and scientific collaboration. Community building and ongoing support for affected families remain at the heart of its mission.
The Gordey Foundation
The Gordey Foundation, founded in 2020 by the family of a child with Duchenne muscular dystrophy, is dedicated to improving care, awareness, and support for patients and families. Through its ProDuchenne community—the largest Russian-speaking DMD network—the foundation unites parents, doctors, and experts to share knowledge, develop resources, and advocate for international care standards. Its initiatives include creating patient registries, advancing clinical guidelines, promoting access to modern therapies, and establishing neuromuscular centers, while collaborating with global partners to drive education, research, and systemic solutions.
DMD Care
DMD CARE is a parents’ association dedicated to improving the quality of life for children with Duchenne muscular dystrophy and other neuromuscular disorders. Based out of Romania, the organization works to ensure early diagnosis, access to quality treatments, rehabilitation services, and opportunities for social and community integration. Through education, advocacy, and collaboration with families, medical professionals, and public institutions, DMD CARE promotes inclusion and independence by organizing social programs, educational initiatives, and cultural events that help children and young people fully participate in society.
Progena (Swiss Duchenne Foundation)
The Progena Foundation, established in 2006 by Huguette and Robert Palm after their youngest son was diagnosed with Duchenne muscular dystrophy, is a Swiss nonprofit dedicated to providing information, support, and resources to affected families. Representing Switzerland as a member of the World Duchenne Organisation (WDO), TREAT-NMD, and ProRaris, Progena has played a key role in advancing clinical research by initiating and funding the Swiss Duchenne and Becker Patients Registry. The foundation also organizes conferences and events to raise awareness and connect patients with global research efforts.
Muscular Dystrophy Association (Czech Republic)
The Muscular Dystrophy Association in the Czech Republic is a nationwide association uniting people affected by muscular dystrophy and other neuromuscular diseases, dedicated to improving quality of life and promoting social inclusion. Its mission is to support children and adults with these conditions by providing information, advocating for better multidisciplinary care, and raising awareness among healthcare professionals and the public. Through educational programs, rehabilitation stays, sports events, and collaborations with similar organizations, it strives to create a supportive and informed community.
Duchenne Parent Project Czech Republic
Parent Project Czech Republic is a Czech patient organization founded in 2001 by parents of children with Duchenne, Becker, and other rare early-onset neuromuscular diseases. Its mission is to advocate for patients, improve quality of life, and ensure access to comprehensive care and effective treatments. The organization supports research and clinical trials, promotes specialized care centers, and raises funds for member services. It also focuses on education by increasing public and professional awareness, sharing updates on care and treatments, and organizing conferences and community events. Through advocacy and partnerships, Parent Project works to improve social and healthcare support for those affected.
Muscular Dystrophy Association of Slovenia
Founded in 1969, the Muscular Dystrophy Association of Slovenia serves as the national representative organization for people with muscular dystrophy in Slovenia. It has played a key role in improving healthcare, social support, economic relief, housing, and training opportunities, while promoting full social inclusion for its members. The society runs notable programs such as social transport services, personal assistance, and seaside medical rehabilitation, and has established disability companies that provide meaningful employment under specialized conditions. Beyond supporting its members, the organization advocates for broader disability rights and accessibility across Slovenia, aiming to create an inclusive and barrier-free environment for all.
DMD Slovenia
DMD Slovenia, founded in 2017, is a non-profit and humanitarian organization dedicated to improving the lives of children with Duchenne muscular dystrophy and supporting their families. Its primary focus is to bring clinical trials to Slovenia and neighboring countries, ensuring access to advanced treatments and therapies. The organization emphasizes collaboration with medical professionals and creating a supportive community for families to share experiences, information, and hope. By introducing global advancements and advocating for better care, DMD Slovenia aims to extend quality of life and provide children with more opportunities for independence.
Organisation of Muscular Dystrophy in the Slovak Republic (OMDVSR)
The Organisation of Muscular Dystrophy in the Slovak Republic (OMDVSR), with 420 members nationwide, supports people with neuromuscular diseases and disabilities through social counseling, employment assistance, and direct aid. In response to the war in Ukraine, OMDVSR partnered with the Slovak Red Cross to assist refugees with disabilities, providing essential equipment such as wheelchairs to those who were forced to leave theirs behind.
White Butterfly
White Butterfly is the only organization in Slovakia dedicated to supporting children, adults, and families affected by neuromuscular diseases. Its mission is to provide professional assistance and comprehensive support to address the challenges of severe and progressive physical disabilities. Guided by the philosophy of independent living, White Butterfly advocates for healthcare, accessibility, education, employment, and transportation rights. By promoting positive examples of resilience, it demonstrates that, with proper support, individuals can remain active and make meaningful contributions to their families and communities.
Croatian Muscular Dystrophy Association (SSDH)
The mission of SDDH is to support people of all ages with muscular dystrophy and neuromuscular diseases in Croatia by developing social services that promote disease management, inclusive education, employment, and full participation in society. Guided by values of dignity, autonomy, non-discrimination, accessibility, and equal opportunities, SDDH works to ensure the protection of human rights and the inclusion of people with disabilities. Its vision is a society where individuals with neuromuscular diseases can live independently and enjoy equal rights alongside those without disabilities.
Serbian Muscular Dystrophy Association
The Serbian Muscular Dystrophy Association, founded in 1968, is a non-profit organization representing over 1,800 people with muscular dystrophy and related neuromuscular diseases through 21 local branches across the country. Its mission is to improve healthcare, social inclusion, and quality of life for those affected through education, advocacy, and implementation of disability rights strategies. The association works to combat discrimination, promote independent living, and expand support services, while also fostering sports, cultural, and creative opportunities for its members.
Duchenne Ukraine
Duchenne Ukraine, founded in 2019, works to protect the rights of patients with Duchenne muscular dystrophy by advancing medical care and life support in Ukraine. The organization has implemented numerous projects, including scientific conferences, workshops, and training for doctors, families, and authorities. It provides updated information on international treatment standards, offers charitable support to families, and organizes joint meetings with healthcare professionals and policymakers. Duchenne Ukraine also develops local programs to ensure proper life support for patients.
Muscular Dystrophy Research Fundraising Foundation (SMDF)
The Muscular Dystrophy Research Foundation, founded in 1986 by Elwyn and Christina Mandley and Jarl Mared, supports research and spreads awareness about Duchenne and Becker muscular dystrophy. It has funded numerous research projects and organized symposia, operating entirely on private donations with a volunteer board and executive team.
Asia
Muscular Dystrophy Foundation Nepal
As the biggest national Muscular Dystrophy organization, MDF-Nepal has cemented itself as a strong link between global research and the Nepalese population. MDF-Nepal brings attention to an overlooked community with a focus on early diagnosis, rehabilitation, and support.
Seven Petal Pansy
Founded in 2018, the Seven Petal Pansy is a service platform dedicated to supporting rare disease patients in China by improving access to treatments such as orphan drugs and medical nutrition. They collaborate with leading hospitals, innovative pharmaceutical companies, and medical food manufacturers to provide real, practical help to thousands of families. Through close communication with patients and ongoing exploration of the rare disease ecosystem, they aim to strengthen the community and create opportunities that improve quality of life for those affected.
Muscular Dystrophy Association (Singapore)
The Muscular Dystrophy Association (Singapore) (MDAS) is dedicated to improving the lives of people with muscular dystrophy and supporting their integration into society. Through holistic programs, they help members overcome isolation, build social and life skills, receive vocational training, and gain the confidence to contribute to their communities. They also provide care and support to families and caregivers, recognizing their challenges as well.
International Alliance of Patients’ Organizations (IAPO)
The International Alliance of Patients’ Organizations (IAPO) is a global network of 300 member organizations across 71 countries, representing 50 disease areas. Founded in 1997, IAPO advocates for patient-centred healthcare by amplifying patients’ voices, influencing policy, and fostering collaboration. Through training, resources, and events like the Global Patients’ Congress, they support members in driving better healthcare outcomes worldwide.
Habib Dystrophy Hope Foundation
Founded in 2020 by Mohammadi Mohiuddin in honor of her son Habib, the Habib Dystrophy Hope Foundation advocates for individuals and families affected by Duchenne muscular dystrophy (DMD). Guided by values of inclusivity, diversity, and equity, the foundation builds supportive networks, raises awareness of the unique needs of the DMD community, and empowers those affected by addressing the medical, social, and emotional challenges of the disease.
Seven Seas Duchenne Japan
Seven Seas Duchenne Japan is dedicated to supporting individuals and families affected by muscular dystrophy through connection, awareness, and empowerment. Founded on the belief that no family should face this journey alone, the organization provides a safe space for sharing experiences, offering guidance, and fostering hope. Leveraging global connections and technology, Seven Seas works to break isolation, highlight opportunities, and promote independence for families in Japan. With a focus on perseverance and collaboration, the group aims to inspire and unite the community while contributing valuable insights to the worldwide effort against MD.
Patients' Association for Dysferlinopathy Japan (PADJ)
The Patients' Association for Dysferlinopathy Japan aims to connect patients affected by muscle diseases caused by Dysferlin gene mutations and collaborate with researchers to advance early treatment options. The association works to resolve naming and diagnostic challenges, ensuring patients and families receive accurate medical information and supporting progress in clinical studies and trials.
Foundation to Eradicate Neuromuscular Disease (FEND)
The Foundation to Eradicate Neuromuscular Disease (FEND) was founded in 2015 to support children affected by neuromuscular diseases by providing comfort, care, and hope for a better future. Committed to finding a cure, FEND also focuses on improving quality of life through the donation of essential equipment such as breathing apparatus, electric wheelchairs, and power lifts.
Duchenne Vietnam
Duchenne Vietnam, led by mothers Phuong Luu and Giang Nguyen, is a nationwide community of over 300 families supporting children affected by Duchenne Muscular Dystrophy (DMD). Originally founded a decade ago by the late Doan Nguyen, the group strives to provide accurate information, advocate for proper Standards of Care, and create opportunities for children to live meaningful lives. The organization offers physical therapy training for parents, financial assistance to disadvantaged families, translated family care guidelines, and webinars with medical experts. By joining the World Duchenne Organization as an aspiring member, Duchenne Vietnam aims to bring greater awareness, resources, and hope to families across the country.
Middle East
Little Steps
Little Steps, an Israeli nonprofit founded in 2010 by parents of children with DMD/BMD, works to advance research, improve treatments, and support families. The organization has invested over 2 million NIS in clinical studies, manages a national patient database, and collaborates with leading research centers, enabling many children in Israel to access innovative therapies. In addition to research, Little Steps provides family support groups, counseling, technological training for youth, and unique programs like adaptive surfing. The organization also raises public awareness through educational resources, conferences, and media outreach.
Panah Children Charity
Panah Children Charity's vision is to ensure that all deprived children, regardless of race, religion, nationality, or gender, have access to healthcare, shelter, nutrition, education, and opportunities that uphold respect and dignity. Its mission focuses on training skilled professionals, supporting schools and hospitals, and providing essential care and resources to reduce suffering, prevent unnecessary child deaths, and foster sustainable communities. With ongoing work bring community, support, and resources to Iran, Panah Children Charity stands committed to bringing connections to underrepresented communities.
The Egyptian Association of Muscular Dystrophy (EAMD)
The Egyptian Association of Muscular Dystrophy (EAMD), founded in 2017 by Mrs. Sherifa Motawaa and Dr. Rasha El Sherif, is dedicated to improving the quality of life for individuals with muscular dystrophy and their caregivers. EAMD advocates for the rights and inclusion of MD patients in Egyptian society, having played a key role in proposing legal reforms to protect the MD community. The association provides tailored care, raises awareness, and works to expand access to medical services, employment opportunities, and housing for those with special needs.
DMD Families Association
The DMD Families Association (DMD Aileleri Derneği), founded in Turkey in 2019 by families of children with Duchenne, is dedicated to improving the quality of life for all DMD/BMD patients and ensuring timely access to approved treatments. The association raises awareness among families and the public, supports scientific research and clinical trials, and advocates for qualified healthcare infrastructure and access to essential medical equipment. Working closely with scientists and state institutions, the association actively promotes awareness through media and online platforms. Operated entirely by volunteers—families, physicians, and supporters—DMD Families Association is committed to advancing care, resources, and hope for those affected by Duchenne.
Lebanese Association for Neuromuscular diseases (L.A.N.D)
The Lebanese Association for Neuromuscular Diseases (L.A.N.D) was established to raise awareness of the challenges faced by patients and their families, providing guidance, resources, and support to improve quality of life. L.A.N.D works to empower families through education, assistance with proper care and equipment, and promoting social inclusion. The organization also creates support groups for families to share experiences and encouragement, while keeping them informed of the latest medical developments, research, and therapies through collaboration with international associations.
The Valdete Trust
The Valdete Trust is an independent aid organization in Albania dedicated to improving the lives of individuals with muscular dystrophy, cerebral palsy, and similar conditions. In a country where resources and accessibility for people with disabilities are limited, the Trust operates a daycare center near Tirana, providing education, therapy, and social activities. It offers accessible transportation, employs teachers and a physiotherapist, and relies on volunteers to support both academic and personal development. The Trust also works to raise awareness about the needs and rights of people with disabilities in Albania.
Oceania
Save Our Sons Duchenne Foundation
Save Our Sons Duchenne Foundation is Australia’s leading organization supporting individuals with Duchenne and Becker muscular dystrophy. Since 2008, the foundation has worked to improve quality of life and educational opportunities for affected young people and their families, while funding vital research in pursuit of a cure. Through advocacy, community engagement, and programs like hospital-based nurse funding and scholarships, Save Our Sons provides essential resources and support across Australia—guided by values of integrity, empowerment, innovation, and compassion.
Muscular Dystrophy Foundation Australia (MDFA)
Muscular Dystrophy Foundation Australia (MDFA) is the national voice for over 40,000 Australians living with muscular dystrophy and related neuromuscular conditions. Representing a wide range of rare, progressive genetic disorders, MDFA advocates for improved health, social, and economic outcomes. Through collaboration with state and territory-based member organizations—many of which are registered NDIS providers—MDFA leads national initiatives, delivers specialized support, and works to strengthen services across Australia’s neuromuscular community.
Muscular Dystrophy Australia (MDA)
Founded in 1984, Muscular Dystrophy Australia (MDA) was created to fill a gap in support for individuals and families affected by muscular dystrophy and neuromuscular conditions. Today, MDA is a registered charity and NDIS provider, offering a trusted, one-stop resource for those living with over 60 rare neuromuscular conditions. Serving people of all ages, MDA provides practical support, information, and community connection for conditions that are often genetic, progressive, and sometimes life-limiting.
The Muscular Dystrophy Association of New Zealand (MDANZ)
What began in the late 1950s as a support group for families affected by muscular dystrophy, The Muscular Dystrophy Association of New Zealand (MDANZ) has since expanded to support individuals with a wide range of neuromuscular conditions. Governed by those with lived experience, MDANZ emphasizes whakapapa (family heritage) and the genetic nature of many conditions. With three regional branches and a national office in Auckland, MDANZ provides personalized support, resources, advocacy, and community connection across New Zealand.
Africa
The Muscular Dystrophy Campaign Nigeria
In Nigeria and many other developing countries across Africa, people living with disabilities—including those with muscular dystrophy—continue to face deep-rooted stigma, marginalization, and a lack of essential support. Despite constitutional protections against discrimination, access to basic services, inclusive infrastructure, and public awareness remains limited. The Muscular Dystrophy Campaign of Nigeria hopes that, by raising awareness, there is hope to inspire government action, uphold international disability rights standards, and unlock the potential of children and adults who currently lack the resources they need to thrive.
Friends of Muscular Dystrophy Kenya (FOMDK)
The Friends of Muscular Dystrophy Kenya (FOMDK) is a foundation committed to supporting individuals and families affected by muscular dystrophy across Kenya. Recognizing the challenges of progressive muscle weakness and degeneration caused by conditions like Duchenne, Becker, and Limb-Girdle muscular dystrophy, FOMDK works to improve quality of life through education, awareness, and a strong community support network. The foundation is dedicated to fostering inclusion, raising public understanding, and building a more compassionate environment for all those impacted by muscular dystrophy in Kenya.
Muscular Dystrophy Foundation of South Africa (MDFSA)
The Muscular Dystrophy Foundation of South Africa (MDFSA) was established in 1974 by parents of a child with Duchenne muscular dystrophy, alongside community advocates. Today, MDFSA operates as a registered non-profit with a national office and three regional branches serving all nine provinces of South Africa. The foundation supports individuals and families affected by muscular dystrophy through access to information, educational workshops, referrals to health services, emotional support, assistance with specialized equipment, and support groups. MDFSA also works to raise public awareness and promote inclusion for those living with muscular dystrophy and related disabilities.