Sandra, one of our trustees, and I had the pleasure of attending the Haemophilia Nurses Association (HNA) Conference at Aston University and Conference Centre in Birmingham. It was a fantastic opportunity to meet and connect with haemophilia nurses from across the country — the true backbone of our community.
These dedicated professionals support families every day, often forming some of the most important and trusted relationships in the lives of those living with bleeding disorders. It was wonderful to have the chance to speak with so many of them, share the work we are doing at Local Families with Bleeding Disorders (LFWBD), and spread the word about the support network we have created for families.
We were also delighted to share copies of our newly launched book, Down to Earth with a Bump, which sparked lots of interest and great conversations. Alongside this, we shared links to our new poetry book, another project created by our members to express the lived experiences of families affected by bleeding disorders.
We provided information packs for nurses to take back to their centres, including our parent-written factsheets on travel, starting school, and hospital stays — practical resources designed to support families through some of the moments that can feel most challenging.
It was also great to meet representatives from a number of pharmaceutical companies, many of whom were very interested in the work we are doing to bring families together, provide peer support, and create opportunities for connection beyond clinical care.
A big thank you to Marie Eales, Chair of the HNA, for inviting us and making us feel so welcome. It was a hugely positive and productive day, and we hope to be back again next year.