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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.