Share Your Experiences

You may be an adult or young person* with SMA, a parent, or a grandparent of someone who has SMA. You may be newly diagnosed, many years "down the line", or bereaved by SMA. We hope there is something for you here.

*If you are under 18 years old, you will need your parent / guardian's permission.

Join One Of Our Virtual Networks

Join One Of Our Virtual Networks

We have a number of options for anyone age 18+ that will allow you to discuss topics or offer tips and advice.

Talk Face-To-Face About Your Experiences

Talk Face-To-Face About Your Experiences

This might be to other people affected by SMA, to politicians and decision makers, the media, or potential funders. If you're interested, click here to find out more.

Write About Your Experiences

Write About Your Experiences

Our 'SMA Voices' cover all sorts of personal stories and people tell us how useful these are when thinking about decisions they are facing, or wanting more generally to learn about the impact of SMA on people's lives.

Sharing Experience Guidelines

Sharing Experience Guidelines

If you have already signed up to, or are considering joining, our Sharing Experiences networks, please read through these guidelines to find out more about the commitments to respecting differences, confidentiality, safeguarding, and whistleblowing.

Share Experiences (forms)

Share Experiences (forms)

If you're interested in joining one or more of our Sharing Experiences networks, please complete one of our forms.