Last updated: 31st March 2023

A safe space for making new contacts learning from one another’s experiences and generally catching up and having a chat:

• Open to anyone aged 18-30 years old who has a diagnosis of SMA.
• Once you join the group, others in the Network can see your mobile number.
• Everyone is expected to follow our Network Guidelines – please make sure to read them.
• Two young adults, Jordanne and Maxwell, who have lived experience of SMA are part of the group. They monitor the chats and provide support, ideas and assistance.
• Our Information, Support and Advocacy Team assists Maxwell and Jordanne to help with any information shared or questions asked.
• As well as always being there for a chat, the group may decide to organise a time for a virtual ‘meeting’ to catch up and chat over a topic of just have a social time.
• If anyone breaks the guidelines, they may be asked to leave the group.
• If you want to talk privately, you can contact Jordanne or Maxwell directly – you will have their contact details once you join the group.
• If information is shared that causes concern, we may reach out to you directly, following our Safeguarding Policy.