Looking back on 2022, we’re looking forward to 2023


2022 was a transitional year for Haemnet, and it was both full and fulfilling. We’ve asked important questions, explored and analysed. We’ve created, published and podcasted. And we’ve shared our research findings, expertise and experience internationally, in print, online and in person.

What does this mean in practice? Well, we’ve added it all up (quite literally) to give a ‘Haemnet in numbers’ summary showing what we achieved last year:


We collected and analysed data for 3 research projects …

In 2022, we got started on the Glanzmann’s 360 study, exploring the lived experience of Glanzmann’s thrombasthenia. This began with an online survey and qualitative interviews. We continued to interview people as part of the Exigency study, exploring the impact of gene therapy on the lives of people with haemophilia and their families, and analysed the results of the Perceptions of Pain in Haemophilia study.


… presented at 5 international conferences …

We presented findings from Project Phoenix, the Perceptions of Pain in Haemophilia study, Cinderella, Emi&Me and Exigency at EAHAD 2022 (virtual congress), WFH 2022 World Congress (Montreal, Canada), the EHC’s Second European Conference on Women and Bleeding Disorders (Basel, Switzerland), the ISTH Congress 2022 (London, UK), and EHC 2022 Conference (Copenhagen, Denmark).


… had 5 papers based on our studies published in peer-reviewed journals …

These included the Cinderella study in Haemophilia and in Research and Practice in Thrombosis and Haemostasis (for which we ranked in RPTH’s Top 10 Altmetric Scores for 2022), the Emi&Me study in Health Expectations, and the Exigency study in Orphanet Journal of Rare Diseases and BMJ Open.


… and created 9 project-related animations

Based on real-life experiences shared by our study participants, we created short films presenting individual stories and findings from Cinderella (It’s not all about boys; Struggles & support), Project Phoenix (Let’s talk; No patient is an island), Emi&Me, and Exigency. We also created three short films about Glanzmann’s thrombasthenia for the Glanzmann’s 360 study. They are all on our YouTube channel.


We published 20 articles in The Journal of Haemophilia Practice …

The 2022 issue of our peer-reviewed journal includes case studies, papers on the ageing haemophilia population, patient selection in paediatric haemophilia trials, discrete choice experiments, point-of-care ultrasonography, satellite clinics in Uganda, central venous access devices, reconstitution devices, the ATHN 7 dataset, the haemophilia gene therapy journey, and reports from the EHC Think Tank and the Second European Conference on Women and Bleeding Disorders.


… produced 8 new episodes of Haemcast

Guests on our podcast discussed the Exigency study, Glanzmann’s thrombasthenia, storytelling in bleeding disorder and rare disease education, the Haemophilia Foundation of Uganda, oral health and bleeding disorders, gene therapy and liver health, and access to gene therapy – all episodes are available to stream.


… and 2 members of the Haemnet team shared their expertise internationally

Kate joined the Novo Nordisk Hemophilia Foundation to provide education and training for health care professionals in person at the Edward Francis Small Teaching Hospital in Banjul, The Gambia, and nationwide via video link in India. Read more on her visit to The Gambia in her blog, here. Luke travelled to New Orleans to share his experience of navigating the haemophilia gene therapy landscape at the American Society of Hematology Annual Meeting.


What’s in store for 2023?

We’ve started the year with a larger and stronger core team. Kathryn, our Editorial Director, has now joined Kate, Mike and Luke as full-time members of the team, and we’ve also welcomed Sam Bristow as our Digital Strategy and Compliance lead. Sam is working with us to uncover even more insights from the data we collect and to identify innovative ways to engage with the bleeding disorder community. We’re expecting the team to grow even further as the year progresses.

January finds us working on Glanzmann’s 360 and another new study approved by ethics. Learning to Live with Non-Severe Haemophilia is exploring the lived experience of people with mild, moderate and severe haemophilia, including those who have undergone therapies which result in them living with a milder phenotype.

We’re helping Local families with bleeding disorders create an animation on patient advocacy. We’re developing new projects relating to haemophilia gene therapy, writing papers, planning more Haemcast episodes, and preparing to launch volume 10 of The Journal of Haemophilia Practice. Along the way we’ll be organising and facilitating more patient ad boards, panels and focus groups.

In February we’ll be attending and presenting at EAHAD 2023 in Manchester, UK, followed by ISTH 2023 (Montreal, Canada) in June, and EHC 2023 (Zagreb, Croatia) in October. We would love to meet you there.

We’re looking forward to a busy and exciting 2023. If you would like to find out more, please drop us a line at info@haemnet.com.