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SMA Europe launches “real-life stories” to show how access to treatment and care impacts people living with spinal muscular atrophy

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SMA Europe is the European umbrella for national SMA patient organisations. One of its core activities is to foster patient-relevant research in the field of SMA, to communicate the value generated from research, and consequently to ensure future support for research within our community.

OdySMA is an SMA Europe initiative that actively tracks and compares access data in Europe to propose actionable steps for access challenges and ensure that no one is left behind. To provide a human face to our data, SMA Europe has called community members to share their stories about how accessing and not being able to access treatment and care impacts 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.

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

Dr Nicole Gusset, CEO and president of SMA Europe states: “Even in countries with good access policies in place, people living with SMA are facing hurdles to access treatment and care. We paused to listen to our community. 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.”

Press contact:

Emilia Debska, SMA Europe, Communications and Marketing Manager / +34 647 638 915

Additional information:

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