SMA Care UK is developing new national guidance to improve care for everyone living with SMA and we need your voice!
We’re looking for people living with SMA and parents or carers of children and young people with SMA from across the UK to contribute to two new areas of guidance:
🦴 Hip health and hip dislocation
🏃 Exercise and physical activity
Your lived experience is just as important as the clinical evidence. By sharing your experiences, priorities and ideas, you’ll help ensure the guidance reflects what really matters to people affected by SMA.
We’re particularly keen to hear from people from England, Scotland, Wales and Northern Ireland, so that the guidance represents experiences from across the UK.
What’s involved?
- Hip health: an online discussion meeting.
- Exercise and physical activity: a small number of online meetings as this work gets underway.
No previous experience is needed – just a willingness to share your views. We’ll keep the groups small to make discussion easy and ensure everyone has the opportunity to contribute.
If you’d like to get involved or find out more, please get in touch with Vanessa, SMA Care UK’s Project Manager: vanessa.christie-brown@smauk.org.uk or send us a direct message via our social media with your details.
Together, we can help ensure future SMA care is shaped not only by clinical expertise, but by the experiences of the people and families who live with SMA every day.
For more information about SMA Care UK click here.
