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
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 communicates any developments in clinical trials
Portugal – APN (Associação Portuguesa de Neuromusculares)
APN was founded in Portugal in 1992, registered as IPSS 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
Ukraine – Children with SMA (CSMA)
Children with SMA, Ukraine (CSMA) connects the parents of children with SMA and people living with the disease to promote exchanges of ideas and positive discussion in the hope of working to solve existing problems. CSMA also supports the maintenance of a national registry of patients with SMA and provides information for care
Serbia – SMA Serbia
SMA Serbia is a non-profit, non-governmental association, established in 2016 by parents of children affected by SMA and adult SMA patients. 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
This site is designed to help you learn about the early signs of spinal muscular atrophy (SMA) and what to do if you spot them
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