Events
Lydia, Sam and Jude’s Newly Diagnosed Weekend experience
Written by Sam Wilson, July 16, 2025
Lydia and her partner were in complete shock when their three-month-old son Jude was diagnosed with severe haemophilia A last year.
With no known family history, they felt totally unprepared for what lay ahead, and turned to the Haemophilia Society for support.
In April they were one of 13 families to attend our Newly Diagnosed Weekend for parents and carers of children recently diagnosed with a bleeding disorder.
Free to our members, the event brings together families, specialist clinicians and people with lived experience of a bleeding disorder to increase knowledge and provide support.
Lydia said: ‘When we arrived, we had so many unanswered questions and I felt incredibly anxious about my son’s future. We left feeling so relieved. How amazing was that weekend to make us feel so informed and to give us the chance to meet other families?’
There’s a free creche at the event, which for many parents was the first time they had left their child in the care of someone outside their family.
Lydia said: ‘I had never left my son with anyone except my mum and my partner’s mum before, so I felt anxious. In fact, he had a great time in the creche and the staff’s expertise gave me peace of mind. It was a great stepping stone for Jude starting nursery, and made me feel a lot better about that transition.’
Families at the weekend were caring for children with a range of bleeding disorders including haemophilia A and B, von Willebrand disorder and a platelet storage condition.
There were talks from Natalie Lawson, a bleeding disorders paediatric nurse, specialist physio Rob Barnard and Claire Harrison, the parent of a teenager with haemophilia B. Our Young Ambassadors, Ryan, Jack and Emily talked about their experiences of living with a bleeding disorder. Parents also got the chance to see people treat themselves and to try giving an infusion themselves.
Following the weekend, Lydia says she and Sam are more confident about Jude’s treatment and have had more informed conversations with his haemophilia nurse.
Lydia said: ‘We felt we were being told what we needed to know about Jude’s care, but we wanted to understand more about the big picture, and that’s what we got from the weekend. I couldn’t recommend the event more highly as a chance to meet other families and really find out what you need to know about your child’s condition.’
We are planning two Newly Diagnosed Weekends in March and October 2026. More details will be on our website soon.