This article was written by Haemophilia Scotland Trustee, Gregor McInnes, who represented the Board and members of Haemophilia Scotland at the WFH Comprehensive Care Summit in Dubai on 23rd-25th April 2025.
Dubai.
Some know it as a city of lights, impressive skylines, luxury lifestyles, gold vending machines and fast cars.
Others, maybe, a stop over destination on their way further east, crass excess or just somewhere they see on reality tv series.
For me, Dubai is home. I live and work here in the Fintech industry. Sure the architecture is amazing, it’s full of wonders like the Burj Khalifa and the museum of the future. But it’s also where I commute through hour long traffic jams and sweat it out in the summer heat of 45 degrees and 80% humidity. But the people are amazing, the work is bleeding edge and, ask my waistline, the food is amazing!
So, that being said, it was my immense pleasure to take a break from my normal week and represent the board and members of Haemophilia Scotland at this year’s World Federation of Hemophilia (WFH) comprehensive care summit (CCS) taking place in Dubai.
In the years between the WFH’s main summits they have the CCS to focus on the advancements in care and treatment of people with bleeding disorders. This year the summit takes place over 3 days and is split into 3 tracks: Medical, Muscular Skeletal(MSK)and patients with bleeding disorders (PWBD).
As I sit here on day one after all of the welcome speeches, I’m staring at the program trying to figure out how I can fit it all in!
Apart from the three main tracks there are a number of satellite symposia, breakout networking sessions and poster and tabletop events… let’s go!
Day one set the energetic pace, with WFH President Cesar Garrido warmly welcoming attendees. Immediately diving into the medical track, discussions centred on redefining global haemophilia care, highlighting the push for broader prophylactic treatments and the ongoing challenges in managing Von Willebrand’s disease (VWD). The session on AI in haemophilia care particularly resonated with me, given my tech background. We explored the intricacies of patient data management, AI-driven risk assessment models, and effective treatment strategies—an exciting fusion of technology and healthcare.
Following a sunny coffee break, I joined the PWBD track, which offered powerful patient perspectives on living with rare bleeding disorders. Speakers shared personal narratives, addressing not only their physical challenges but also the profound psychological impacts. The session raised critical questions about whether current support networks sufficiently cover rarer disorders, prompting important discussions on inclusivity within our community.
After a stimulating lunchtime chat with trustees from Haemophilia Society UK and Haemophilia New Zealand, we turned our attention to women’s health. Discussions tackled iron deficiencies, treatments specific to women, and the unique impacts of VWD. A poignant documentary about individuals with bleeding disorders attempting to climb Mont Blanc provided a compelling narrative on resilience and determination.
Switching gears to the MSK track, we delved into the complexities of osteopathic surgeries and postoperative physiotherapy, underscoring the importance of tailored therapeutic approaches for those with haemophilia. The day concluded with an emotional session on the broader family impacts of bleeding disorders, featuring heartfelt testimonials from multi-generational families and parents advocating passionately for improved recognition and support.
Day two saw valuable networking take centre stage. My highlight was connecting with Sam Bristow about a groundbreaking VWD study, exploring ways Haemophilia Scotland could collaborate and involve our members. Conversations with peers from NMOs, including Thailand, New Zealand, and Kenya, sparked ideas about fostering closer international collaboration and resource sharing. Sessions on ageing and bleeding disorders offered fresh insights from leading experts and personal reflections, providing practical advice on managing MSK complications.
The third and final day focused heavily on women and girls with bleeding disorders, emphasizing global initiatives aimed at advancing comprehensive care. An inspiring panel discussion showcased international strategies and underscored the importance of continued advocacy.
Well, that’s the end of 3 very busy days at the WFH CCS. As I look back and reflect on my experience, I think one of my biggest takeaways from my discussions and listening to the very informative speakers, both medical practitioners and patients with various bleeding disorders have been around the language that is evolving as we discuss these topics. Where once we talked only about Haemophilia, we now discuss bleeding disorders, where we used to talk about carriers, we now discuss these people as having the BD in their own right. It may seem trite and inconsequential but through my interactions with clinicians and people with BD – this stuff matters, feeling included, having a defined status and feeling more involved in the treatment pathways and member organisations.
From the medical track I learned about how different countries and regions are tackling issues and developing comprehensive care systems in different ways and it has been hugely interesting to watch these practitioners being involved in conversations, learning from their peers and being inquisitive about alternative approaches. It was also very interesting to see some attendees with very rare BD finding out that while they are very rare in their own geography, elsewhere in the world their condition is much more prevalent- leading to new relationships forming and new sources of information and strategies.
From the PWBD track it was great to hear from people across the world, meet and discuss topics with representatives from other NMOs. What’s very clear is that we have some of the most resilient and heroic people in our memberships, the stories were heart wrenching, joyful, desperate and beautiful in equal measures.
I look forward to giving my full report to the board of trustees very soon. Whilst I won’t be leaving Dubai like the rest of the attendees, I do leave the conference with a bucket full of new contacts, stories and shared experiences that I hope to use as we continue to make sure that your member organisation continues to serve our community in the best way it can.
So, from Dubai, for now, farewell and safe journey to all of attendees of the WFH CCS.
Gregor,
Trustee, Haemophilia Scotland