Last updated: 31st March 2023

A safe, supportive space for making new contacts and sharing experiences about life with SMA:

• Open to anyone age 18 or over who is a parent, guardian or primary carer of someone who has 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 parents of children with SMA, Amy and Becky, are part of the group. They monitor the chats and provide support, ideas and assistance.
• Our Information, Support and Advocacy Team assists Amy and Becky to help with any information shared or questions asked.
• If you have a private matter you want to discuss, please contact SMA UK’s Support and Outreach Team on 01789 267520 or email: office@smauk.org.uk
• If anyone breaks the guidelines, they may be asked to leave the group.
• If information is shared that causes concern, we may reach out to you directly, following our Safeguarding Policy.