Living with SMA
Meet Victoria...
A beautiful little girl from Switzerland with a shy smile and love for horses, who was diagnosed with SMA as a toddler.
Follow her story...
As individuals living with SMA and parents we have a unique understanding of the impact of SMA, and a natural and fierce determination to make a positive difference to the lives of all those also affected.
Our personal situations engender a uniquely empathetic and holistic view of SMA, enabling us to better understand different perspectives, and see the bigger picture in a way that supports the realisation of our goals.
"For me, living with SMA is like a glacier that slowly melts. In SMA Europe we join our forces to have access to optimal treatments in order to preserve our health, our autonomy, our dignity. We join our forces to save this glacier, this body that allows us to be alive. We advocate for a stabilization and we wish to offer a peaceful future to all the people affected by SMA."
Véronique Van Assche, Chair of the SMA Europe Adult Committee
In focus
What do we do?
From concept to the patient
We work actively with all stakeholders to realise “concepts” and make them accessible to our community. We want to bring the experience from daily living with SMA to the decision making tables early.
Adult Committee
This committee is one instrument that helps us to ensure that that the perspective of the chronic SMA population is included in all our workstreams.
EUPESMA Surveys
We work to bring patient experience in a systematic, evidence-based way to the stakeholders to ensure patient-relevance when it comes to develop therapy and care models in SMA.
Daily Life Study
In the SMA Daily Life Study we follow individuals over time and we focus to understand how SMA impacts different areas in our daily living and how these factors are interrelated.
Outreach
We participate in multistakeholder advisory boards, are represented at EMA, publish own studies and positions, and work with many partners to elevate the voice of the community.
OdySMA
With OdySMA, we want to mobilise the community to highlight challenges in access to medicines and care; to ensure no one is left behind. With our atlas we highlight based on evidence gaps and challenges across Europe.