We were delighted to take part in the Scottish Inherited Bleeding Disorders Network (SIBDN) Annual Meeting in Edinburgh on Friday 21st November. The programme brought together haemophilia centre staff from across Scotland to share updates, explore new developments, and strengthen collaboration in the care of people with inherited bleeding disorders.
Women’s Group Perspective
Our Women’s Working Group was represented by Carolyn McGimpsey, who shared powerful insights into the lived experiences of women and girls navigating both carrier status and diagnosis. Throughout her talk, she drew on recommendations from The Haemophilia Society’s SACRed Project report, published earlier this year. Carolyn invited attendees to work with us to help address some of the key recommendations discussed. Her contribution underscored the importance of recognising and tackling the unique challenges faced by women in the bleeding disorders community, and of ensuring their voices are heard.
Updates from Haemophilia Scotland
Later in the programme, Alan Martin (Director) and Maxie Cobern-Burke (Financial Wellbeing Officer) provided an update on the work Haemophilia Scotland has been leading. This included:
- Progress on member engagement and outreach initiatives.
- Ongoing projects to strengthen support for families and individuals across Scotland.
- Practical guidance from Maxie on how clinicians can write effective supporting letters for benefits applications, helping patients access the financial support they need.
Building Connections
The meeting was a valuable opportunity to learn from haemophilia centre staff, hear about clinical and laboratory perspectives on new treatments, and engage with colleagues working across Scotland. We are grateful to the organisers for the invitation and for creating a space where patient voices and professional expertise come together to improve care.
Looking Ahead
Haemophilia Scotland remains committed to working in partnership with the SIBDN and haemophilia centres across the country. Together, we can continue to strengthen services, improve access, and ensure that the experiences of our Scottish bleeding disorders community shape the future of care.