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This Mental Health Awareness Week, from the 13th to the 19th of May, it’s crucial to recognize the unique challenges faced by those living with Spinal Muscular Atrophy (SMA).  

Living with SMA can mean dealing with loss of strength and mobility; experiencing serious or life-threatening episodes of respiratory illness; having to rely on other people for personal care and daily living; and having to fight to get the equipment you need. Any one of these (or other issues) can take a significant toll on emotional health and wellbeing.  

With 1 in 17 people in the UK affected by a rare disease at some point in their lives, accessing essential mental health support through conventional channels such as GP services or the NHS can prove to be a logistical and financial burden for many, and individuals with rare conditions often find themselves navigating a healthcare landscape that doesn’t always cater to their unique needs. 

As advocates for the SMA community, we understand the importance of addressing mental health and well-being alongside physical health concerns. That’s why we’re reaching out to you, our valued community members, to share your insights and experiences. Your perspectives will not only help us better understand the challenges you face but also inform our future initiatives. 

Your participation in this brief survey is immensely valuable to us. Rest assured that all responses will be treated with the utmost confidentiality. Together, let’s shine a light on the vital intersection of mental health and rare diseases like SMA.

Take the survey here!