CHSF’s private community group on Facebook is a peer-support forum for heart families and patients to network with others who have had shared experiences.

The group consists of patients with congenital heart disease, parents and family members who find it an enormously supportive service. Many networks and friendships have been formed as a result of this private group. We are very proud to witness how our heart families help each other.

Me and my family were incredibly grateful for the support from CHSF’s Facebook community. We didn’t know what to expect during open heart surgery, and to receive both words and pictures of comfort was really reassuring.” — Mia, Heart Mum

Set up in 2010, the group currently has over 5,300 members. Members have to answer a few basic questions to join, to ensure it is the right group for them. Just like any other forum, the CHSF team monitor posts to make sure essential etiquette is followed.

The main benefits for members are that it can provide reassurance, companionship and basic information which doesn’t need medical input. The group is not a medical resource and does not provide medical advice. If we see a question which is medical, we refer members to the relevant hospital teams.

Speaking to other patients or parents of children with heart conditions can be a lifeline.

Support for families: October 2025

Support for families: October 2025

“I was most supported whilst we were in hospital and I was away from all my family alone. I remember having visits at the side of the bed and a friendly face to talk to as well as wellbeing trolleys etc!”” - heart mumDuring the month of October... 12 referrals...

Support for families: September 2025

Support for families: September 2025

“You have been wonderful, please keep up the outstanding work” - heart mumDuring the month of September... 7 referrals received for targeted Family Support 7 families engaged with 6 young people and their families worked with and supported Financial support in...

Family Support Update: Inclusion in action

Family Support Update: Inclusion in action

Mansi Dass joined Children’s Heart Surgery Fund as Family Inclusion Worker in late June. Here’s an update from CHSF’s Head of Family Support, Sarah Cherry on how Mansi is dedicating her time to promoting inclusion, celebrating cultures and raising awareness to bridge...