Argentina – Familias AME Argentina

Familias AME is a non-profit organization dedicated to offering assistance to individuals affected by SMA (Spinal Muscular Atrophy) and their loved ones

Brazil – Instituto Nacional da Atrofia Muscular Espinhal (INAME)

The National Institute of Spinal Muscular Atrophy, or INAME, is a non-profit organization of family members and individuals living with SMA. The association is committed to assisting families in Brazil at every stage of their SMA journey, from diagnosis to the everyday aspects ensuring comprehensive care

Canada – CureSMA Canada

What started as a small community named “Families of SMA Canada” back in 2000, CureSMA Canada is now a much larger organization with the power to help individuals, families and professionals affected by SMA

Latin America – Alianza Latinoamericana AME (ALAME)

Made up of 16 organizations, including 2 support groups, in 14 Latin American countries, ALAME seeks to fight for the early detection of Spinal Muscular Atrophy and to improve the experiences of the SMA community in Latin America.

Additional information will be available soon

Belgium – SMA Belgium

SMA Belgium is an organization formed by two existing Spinal Muscular Atrophy (SMA) groups: Spierziekten Vlaanderen (Flemish neuromuscular organization) and ABMM (French-speaking neuromuscular organization in Belgium). Their goals are to establish communication networks among SMA-affected families, to share insights on scientific research advancements and available treatments, and provide public support. Their partnership with various stakeholders places them at the forefront of the drug development pathway, from the laboratory to the patient

Czech Republic – SMÁci – Czech Republic

SMÁci, the Czech SMA Patient Organization, was founded at the end of 2016 and officially registered in March 2017. The organization’s primary objective is to provide support to patients and families in their journey with SMA. SMÁci aims to be the point of communication between all parties involved, and to facilitate the seamless execution of the steps throughout the journey, to improve the quality of life for those affected by SMA. Additionally, since 2018, they have been an established SMA Europe observer member

Europe – SMA Europe

SMA Europe is the unifying body for 23 SMA patient and research organizations covering 22 European countries. Their collective mission is to enhance the quality of life for individuals living with SMA

Finland – SMA Finland

SMA Finland was established in 2018 by a dedicated group of SMA patients and parents of children with SMA. The organization’s main objective is to ensure that all SMA patients, regardless of their type or age, have access to essential medical treatment. SMA Finland also directs its efforts to enhance the quality of life for people living with SMA and raising awareness about the condition with authorities, doctors, and the general public

Greece – MDA Hellas

Established in 2000, MDA Hellas is a non-profit organization based in Greece, dedicated to improving the experience of individuals living with neuromuscular diseases by supporting research in this field. They arrange events and educational initiatives to inform patients about advocacy, clinical trials, and innovative treatment and technologies. MDA Hellas has played a pivotal role in founding and maintaining three specialized neuromuscular units in Greece. They often collaborate with other neuromuscular disorder organizations and partner with universities all over the globe

Italy – Famiglie SMA

Famiglie SMA is an Italian non-profit, non-governmental organization that was launched in 2001 by parents of children with SMA. The community helps to provide families with information on the latest advancements in scientific research, available treatments, and the support available from public institutions. Famiglie SMA is a key advocate and supporter of SMA research. The organization strives to keep the community informed about any updates related to clinical trials

Portugal – APN (Associação Portuguesa de Neuromusculares)

APN was established in Portugal in 1992 and recognized as a legal person of public utility. It aims to be the leading institutional advocate for people with rare neuromuscular diseases. With over 1,800 members, including patients, families and doctors, it aims to provide a range of support, from social and psychological to technical and human, for all patients with neuromuscular diseases and their families or caregivers

Russia - SMA Family Foundation

The SMA Family Foundation, created by parents of children with SMA, provides support and empowerment to families with individuals affected by SMA

Serbia – SMA Serbia

SMA Serbia is a non-profit, non-governmental organization founded in 2016 by parents of children and adult patients affected by SMA. Their primary aim is to enhance the quality of life for those impacted by SMA. The association is committed to raising public awareness, protecting the rights and interests of patients, and enhancing their social and medical support. Ensuring that every patient with SMA receives the appropriate treatment is the ambition of their advocacy

Spain – FundAME

FundAME is a Spanish non-profit, private foundation established in 2005. The members are patients affected by SMA and their family members. FundAME explores opportunities to improve the quality of life for those affected by SMA, and promote research into the disease.

The foundation supports research at both a national and global level, to fill the gap between today and the day a cure for SMA is available

UK - SMA UK

Since 1985, SMA UK has been dedicated to assisting, educating, and advocating for the SMA Community

Ukraine – Children with SMA (CSMA)

Children with SMA (CSMA) serves as a platform to bring together the parents of children with SMA and individuals living with the condition in Ukraine. Their goal is to facilitate the exchange of ideas and positive interactions to find solutions for current challenges. CSMA plays a pivotal role in maintaining a national SMA patient registry and offers essential care-related information