We recognise the importance of having access to connection and support. Our MPS Social Hubs provide opportunities to connect for our membership.
We aim to ensure that none of our members are left behind – whether you are a teen or a grandparent, we aim to connect you with a group of people who truly understand. The MPS Social Hubs are groups of MPS Society members who meet via WhatsApp, Zoom and face to face throughout the year. If you would like more information about our Social Hubs contact Alison from our Support and Advocacy Team.
Fabry
This group is open to all of our Fabry community. We recognise that your needs can sometimes differ from the wider MPS community – so this is YOUR space. We’ve also got a Fabry men’s group, think of it a little bit like a virtual “man cave”!
Time to chat
This group combines a weekly Zoom catch up and lively WhatsApp group. Conversation ranges from the profound to the ridiculous and we couldn’t love it more! This group is for over 18s who are affected by MPS or a related condition.
Parents and carers
We have a number of active WhatsApp groups for mums, dads and those who have caring responsibilities. This is your place to share, vent and find a shoulder to lean on.
Bereaved
The MPS Society offer an annual bereaved family weekend and opportunities to meet virtually throughout the year.
Each year we attend a memorial weekend at Thoresby Hall. This is a chance to celebrate our beautiful children. We visit the Wood of Remembrance and Hope where each tree is planted in memory of a child or young adult who died from MPS. It is a beautiful, tranquil place where we can reflect on the lives lost and a chance to grieve without explanation.
Angela
These groups are facilitated and moderated by the Support and Advocacy Team. They are there to provide support and keep tabs on the group to make sure everyone feels safe. If you would like to be connected with a Social Hub, please contact the team.
Rare Voices Advisory Group
Our members are at the heart of our community, and as such we want to ensure that your voices are heard when we plan and structure the services we provide.
This is your chance to generate ideas that will help individuals with MPS, Fabry or related lysosomal diseases.