We joined 21 other organisations at a meeting on 15 June, held by the Genetic Alliance UK. The aim of the meeting was to gather information to feedback to the Scottish Government to help them make decisions about when and how to ease guidance on shielding.
Lynnette, our Community Fundraising & Support Officer/Duchenne Parent was invited to attend the meeting. She spoke about her experiences working full time throughout COVID-19 with 3 children at home, her fears and worries about lockdown and shielding. She also shared experiences from the Duchenne community.
We stressed the importance of needing support and advice for families to help them make decisions about whether to stop shielding. We also mentioned financial help for families who have to remain shielding rather than being able to return to work.
The meeting was held via Zoom and many important topics were raised and discussed, thank you to Genetic Alliance UK for the invitation to take part and represent the Duchenne community in Scotland.
About the hub
The Genetic Alliance UK COVID-19 hub is for everyone affected by genetic, rare and undiagnosed conditions.
A Life Fulfilled In Everyway (ALFIE)
