Bringing Families Together
When a family receives a diagnosis of congenital CMV (cCMV), they’re often entering completely unfamiliar territory. Most parents tell us they had never even heard of CMV before their child’s diagnosis, and many had never met another family affected by cCMV until they found CMV Action.
That’s why we launched CMV Connect in June 2025, thanks to funding from The National Lottery Awards for All.
Over one year on, we’re proud to share our first annual evaluation report, which shows the difference a connected community can make for families living with congenital CMV.
A year of growth
Since launching in June 2025, CMV Connect has grown into a thriving national community, supporting families through peer connections, wellbeing sessions, online events and our information and support Service.
Some of the highlights from our first year include:
The biggest difference? Families feel less alone
The strongest finding from our Year One evaluation was clear.
Families consistently told us that CMV Connect reduced feelings of isolation and helped them feel part of a supportive community.
Many also reported feeling more confident talking to healthcare professionals, better able to advocate for their children, and more informed about congenital CMV.
These findings reinforce something we’ve always believed: connecting families with others who understand their journey can have a lasting impact.
Looking ahead to Year Two
Year One has laid the foundations for what’s next.
Over the coming year we’ll continue developing our peer support offer, strengthen partnerships with healthcare professionals to reach families earlier following diagnosis, pilot face-to-face meet-ups, and expand opportunities for families to shape CMV Action through lived experience.
We’re incredibly grateful to everyone who has made CMV Connect possible – our volunteers, Family Advisory Panel members, healthcare partners, funders and, most importantly, every family who has shared their experiences and supported one another.
Read the full report
To read more about our impact and plans for Year 2, download the full report below.
To read more about our impact and plans for Year 2, download the full report here
A huge thank you to The National Lottery Community Fund and National Lottery players for making the first year of CMV Connect possible. Your funding has helped bring families affected by congenital CMV together, creating opportunities to connect, share experiences and access support. We are incredibly grateful for your investment in our community and look forward to building on this success in Year Two