On the weekend of 7th-8th June, we brought together individuals and families new to the world of bleeding disorders for our Recently-Diagnosed Weekend—a special event designed to offer information, connection, and encouragement. Set against the beautiful backdrop of Crieff Hydro, it was a weekend full of expert talks, supportive conversations, and time to unwind and enjoy the facilities.
We were incredibly fortunate to be joined by a brilliant team of healthcare professionals who generously shared their time and expertise. Over the weekend, we heard from:
- Julie Bissett, Paediatric Oncology / Non-Malignant Haematology Nurse Specialist at Raigmore Hospital
- Kat Adams, Non-Malignant Haematology Nurse Specialist at the Royal Hospital for Children, Glasgow
- Lucy Paterson, Clinical Nurse Specialist at the Royal Infirmary, Edinburgh
- Dr Gráinne O’Brien, Clinical Psychologist
- Sean Lloyd, Specialist Physiotherapist
- Dr Sarah Clark Consultant Haematologist at the Royal Hospital for Children, Glasgow.
Each brought valuable insight into navigating a new diagnosis, and we’re so grateful for their contributions.
We were also very happy to have had Dr Fernando Pinto, Consultant Haematologist at the Royal Hospital for Children in Glasgow attend, too.
Topics That Matter
Throughout the weekend, we explored key topics including:
- The role of specialist nurses in nursery and early years
- Strategies for managing treatment routines
- Supporting active lifestyles with a bleeding disorder
- Understanding treatment options for haemophilia and von Willebrands
- Insights into family life and emotional wellbeing
These sessions were not only informative but truly empowering—helping attendees feel more confident and prepared as they begin this journey.
Stories That Stay With Us
We heard the personal experiences shared by Joanne and Lisa, two of our incredible members who spoke candidly about parenting children with bleeding disorders. Their stories resonated with many in the room and reminded us all of the strength found in shared experiences.
Community, Connection & Advocacy
As conversations unfolded across the weekend, important themes emerged—particularly around the need for better support in nurseries, schools, GP practices, and community settings. These are areas we’ll continue to advocate for, and we’ll keep you updated on progress as we go.
Before wrapping up, we came together for a closing reflection session. It was clear that the most powerful takeaway for many was the comfort of connection—realising they’re not alone, and that there’s a strong, supportive community ready to walk alongside them.
Thank You
To everyone who joined us: thank you. It was an absolute pleasure to spend the weekend with you, and we hope to see you again soon.
A special thank you goes to The National Lottery Community Fund and The WM Mann Foundation for making this weekend possible through their generous support.
Next Up: Members’ Day & AGM – Save the Date!
We’re excited to announce that our next big event will be our Members’ Day and AGM, taking place on Saturday 30 August at Edinburgh Zoo. Keep an eye out—registration opens soon!