Our online community spaces continue to grow, with more than 200 members in our WhatsApp communities and over 300 members in our Facebook community. We recently asked members about their experiences of being part of the WhatsApp groups and the feedback was overwhelmingly positive.
Members told us the groups help them feel:
less isolated
emotionally supported
more connected to the wider MPS community
better able to navigate day-to-day life, services and support systems
Over 85% of respondents said the WhatsApp groups helped them feel more connected to the wider MPS community.
While some members read conversations and dip in when needed, others use the groups to ask questions, share lived experience, offer support, discuss symptoms and treatments and connect with people who understand rare disease life.
Across the groups, conversations regularly include:
practical advice and recommendations
navigating healthcare and EHCPs
emotional support during difficult times
condition-specific discussions
social chat, hobbies and everyday life
The strongest theme throughout the feedback was the value of talking to people who truly get it.
Some of the comments members shared included:
“Belonging and understanding.”
“Connections with people who know the struggle.”
Making new friends for life.
“It’s good to know I’m not alone.”
“Although I may not need regular support, I know that it’s there if I need it.”
Being able to talk openly and honestly with people who understand, with no judgement, is fantastic.
We also heard suggestions for more structured discussions and topic-based conversations within the groups - something we’ll be developing further over the coming months.
Join the conversation
Whether you want to actively join conversations or simply know there’s a supportive community there when you need it, our community spaces are here for you.
