Community support
Living with SMA is not something anyone should navigate alone. There are many global, community-led organizations who offer information, connection, and support for people with SMA, like you, and those who care for you.
Living with SMA is not something anyone should navigate alone. There are many global, community-led organizations who offer information, connection, and support for people with SMA, like you, and those who care for you.
SMA Europe is a global network of patient advocacy organizations dedicated to supporting people living with SMA across Europe and the rest of the world. SMA Europe works to raise awareness, share educational resources, and amplify the voices of people and families affected by SMA.
Setting priorities, promoting, funding
and generating patient-relevant
research.
Using evidence-based advocacy, they
represent the voice of patients in
decisions that affect them.
They campaign to raise awareness of SMA and promote the interests of our community.
Through its member organizations, SMA Europe connects individuals and families to local patient advocacy groups in different countries.
SMA Europe brings together educational resources developed with and for the SMA community. Their resources are designed to support you and those who care for you, offering practical, easy to understand information from a European and International perspective.
The Care Standards for SMA outline a multidisciplinary approach to care, helping individuals and caregivers understand the different types of support that may be involved across daily life. This includes areas such as rehabilitation, nutrition, respiratory care, and overall everyday management, as well as the roles of different healthcare professionals.
Explore practical tools and resources to help you navigate everyday challenges, important conversations, and growth towards greater independence.
A dedicated space for caregivers supporting young people with SMA, including guidance on encouraging independence, building confidence, and taking care of themselves too.
This website provides general educational and support information for people living with SMA and their caregivers. It is not intended to provide medical advice, replace discussions with healthcare professionals, or promote any specific treatment. Always consult your healthcare professional for any questions regarding your condition or its management.
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