Argentina – Familias AME Argentina

A non-profit organization that provides support to SMA patients and their families

Brazil – Instituto Nacional da Atrofia Muscular Espinhal (INAME)

The National Institute of Spinal Muscular Atrophy – INAME is a non-profit association of family members and patients with Spinal Muscular Atrophy (SMA), supporting the needs of families in Brazil, from diagnosis to the daily routine of multidisciplinary action

Canada – CureSMA Canada

Support, Research, Hope. Supporting Canadian families and individuals affected by Spinal Muscular Atrophy

Latin America – Alianza Latinoamericana AME (ALAME)

Composed by 16 organizations, including 2 support groups, in 14 Latin American countries, with the purpose to fight for the early detection of Spinal Muscular Atrophy and improve the quality of life of the entire SMA community in Latin America.

Additional information will be available soon

Belgium – SMA Belgium

SMA Belgium is an umbrella organization created by the SMA groups; Spierziekten Vlaanderen (Flemish neuromuscular organization) and ABMM (French-speaking neuromuscular organization in Belgium). SMA Belgium is dedicated to building communication networks between families with SMA about progression in scientific research, available treatments and public assistance. They also work to collaborate with various stakeholders to optimize the drug development path from the laboratory to the patient

Czech Republic – SMÁci – Czech Republic

SMÁci, the Czech SMA Patient Organization, was established in late 2016 and registered in March 2017. The organization aims to support patients and their families with their quest for SMA. It strives to establish a communication channel between all parties involved and help to achieve a smooth execution of all available steps to improve quality of life. In 2018 they also became an observer member of SMA Europe

Europe – SMA Europe

An umbrella organization for 23 SMA patient and research organizations from 22 different countries across Europe to improve the quality of life of people who live with SMA

Finland – SMA Finland

SMA Finland was founded in 2018 by a group of active SMA patients and parents of children with SMA. The primary goal of the association is to provide access to medical treatment to all SMA patients, despite the type or age. Other important goals for SMA Finland are also to improve the quality of life of individuals with SMA and to create awareness about SMA with authorities, healthcare professionals and the general public

Greece – MDA Hellas

Founded in 2000, MDA Hellas is a Greek non-profit organization that focuses on improving the lives of individuals with neuromuscular diseases by furthering research into this area. They organize events and education programs for patients in matters of advocacy and clinical trials as well as novel medicines and technologies. MDA Hellas established and supports three specialized neuromuscular units in Greece and also cooperates with world organizations for neuromuscular disorders as well as universities from Greece and abroad

Italy – Famiglie SMA

The Association of Families of SMA, Famiglie SMA, is an Italian non-profit, non-governmental organization that was founded in 2001 by parents of children with SMA. The association aims to inform families about progress in scientific research, available treatments and assistance to which they are entitled to from public institutions. Famiglie SMA promotes and supports research into SMA and frequently communicates developments in clinical trials

Portugal – APN (Associação Portuguesa de Neuromusculares)

APN was founded in Portugal and recognized as a legal person of public utility and has sought to assert itself as the representative institution of neuromuscular diseases considered rare. It currently has more than 1800 members from different horizons linked to Neuromuscular diseases – patients, families, doctors and health technicians. Its main objective is to provide social, psychological, technical and human support to all patients with neuromuscular disease and their families or caregivers

Russia - SMA Family Foundation

Established by parents of children with SMA, supports and empowers families with people living with SMA

Serbia – SMA Serbia

SMA Serbia is a non-profit, non-governmental association, established in 2016 by parents of children affected by SMA and adult patients with SMA. Their main goal is to increase the quality of life for those affected by SMA. The association strives to raise public awareness as well as protecting the interests and rights of patients and improving their social care and medical support. They advocate for every single patient with SMA to get the proper treatment

Spain – FundAME

FundAME is a Spanish non-profit, private foundation that was established in 2005 and is made up of patients affected by SMA and their relatives. They strive to find ways to improve the quality of life for those affected by SMA and promote research into the disease FundAME supports research at both a national and international level to bridge the gap between today and the day a cure for SMA is available

UK - SMA UK

Since 1985, SMA UK have worked with the SMA Community supporting, informing and advocating for SMA

Ukraine – Children with SMA (CSMA)

hildren with SMA, Ukraine (CSMA) connects the parents of children with SMA and people living with the disease, and facilitates the exchange of ideas and positive discussion to find solutions for existing challenges. CSMA also supports the maintenance of a national registry of patients with SMA and provides information for care