Real-life stories

The real-life stories of people living with SMA show how access to treatment and care can impact lives.

Meet our community & learn more about their access journeys. 

Real people behind the data

Real-life Stories show how access to treatment and care impact the lives of real people living with SMA and their families. While stabilising treatment for SMA is available, European-wide access is not.

Meet community members and hear their voices to understand the impact that equitable and unconditional access would have on their lives.

OdySMA actively tracks and compares access data in Europe to propose actionable steps for access challenges and ensure that:

No one is left behind

Even in countries with good access policies in place, people living with SMA are facing hurdles to access treatment and care for SMA. We paused to listen to our people. The voices are loud and clear: access is still very complex in practice. Equitable access changes lives. We need it now, throughout Europe, for all people living with SMA.”

Nicole Gusset, President and CEO

OdySMA continuously and systematically collects and centralizes access data to map access to treatment and care throughout Europe.

To provide a human face to our data, we have called on our community members to share their stories about how accessing and not being able to access treatment and care impact their lives. 
Real-life stories offer real life portraits, created through participatory and collaborative storytelling with their protagonists. These stories illustrate the concrete impact of issues that are high on the community’s priorities. These include the positive impact of early diagnosis through newborn screening, the practical hurdles people face even when they have already been approved for treatment, and grey areas and gaps in access that leave entire groups of people living with SMA without any access to treatment. The stories also shed light on new priorities in the community, such as the importance of being able to choose which treatment to undertake, or the way that the diagnosis is communicated to the family. Finally, we showcase successes and challenges in patient advocacy journeys in different European countries. 

Real-life stories amplify the impact of OdySMA by providing insight into the real impact of access in people’s lives. 

Do you want to share your story? Please get in touch with Laura Gumbert (laura.gumbert@sma-europe.eu).

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An SMA Europe initiative, supported by:

BiogenNovartisRocheScholar Rock

OdySMA is a participatory advocacy tool. Therefore SMA Europe cannot warrant the completeness, reliability, or absolute accuracy of the data shared on OdySMA, as there may be changes that our members and supporters do not immediately inform us of. Should you identify inaccuracies or omissions, please contact laura.gumbert@sma-europe.eu us and let us know. We count on you!