A Week In The Life: Julia

Written by Julia Collins, May 10, 2023

Julia Collins is our Supporter Engagement Officer, who works as part our services team. She is jointly responsible for running events, organising membership data, coordinating volunteers and engaging with haemophilia centres around the UK. Here she gives us an insight into her working week. 


We’re only five days away from Haemophilia Live, one of our major events which brings together people with haemophilia from around the UK. I feel excited about meeting new members and reconnecting with some familiar faces but also a bit overwhelmed a busy week ahead. Planning started a year ago, but there’s always a lot to do in the final couple of days.


I rely on our fantastic Youth Ambassadors (YA) when I’m organising events. Their first-hand knowledge about living with a bleeding disorder is invaluable, especially at our Newly Diagnosed Weekends for families who are coming to terms with having a child with a bleeding disorder. Seeing our YAs living their lives to the full always helps to reassure parents that the future for their child should be bright. Before joining the Haemophilia Society, I worked for the Irish Haemophilia Society alongside its Chief Executive, Brian O’Mahony. He taught me so much about living with a bleeding disorder and I learnt a lot in that role which helps me in my job today.


We’re moving towards a new data system which will hopefully be a lot more efficient. Today I’ve got the slow but important job of working through our existing membership information. We often don’t have up-to-date email addresses or mobile numbers, so I’d urge our members to let us know when their details change. With postal costs soaring we try to email information if we can. 


I make a final check with this weekend’s speakers to ensure that everyone is clear about what they are doing. I’m grateful to clinicians, volunteers and our trustees for giving up their time to come to Haemophilia Live. At this event we’ll be talking about the issues that matter most to our members, such as the challenges of ageing with a bleeding disorder, new treatments and transitioning from paediatric to adult care. We always try to have a mix of expert opinion and lived experience.


I manage to wrestle all our publications, paperwork and promotional material into a large suitcase and, with the help of my colleagues, we get everything to Nottingham. I know I’ll hardly sleep tonight as I think about everything that needs to be done tomorrow!


I’m relieved to say that Haemophilia Live goes well. The sessions are interesting and there’s great feedback from our members who say they enjoyed hearing from clinicians as well as having the chance to network with other people with haemophilia. As I travel home I feel happy that this event has made a positive difference to our members’ lives. Now it’s time to start planning the next one!