In the last few years, the world of bleeding disorders saw many new challenges, changes and ambitions, and 2022 was no different.
After two years of social distancing, we reunited physically. When the committees, events and workshops all came together, it was as if they had spent just a day or two apart. They maintained a focus and resilience towards what needed to be done moving forward. The Youth Leadership Workshop had several inspiring young leaders, engaged and driven. The Women and Bleeding Disorders Committee held their second in-person conference. Our Leadership Conference, New Technologies and Economics workshops again pulled the community together with new and established leaders. The annual EHC Conference in Copenhagen was a resounding success, with conversations, discussions and laughter in every corner of the venue. In particular, we thank the Danish Haemophilia Society – their staff, patients, parents, clinicians, and volunteers – for their hard work and warm hospitality. Our final event of the year, the Inhibitor and Rare Summit reminded us of all the achievements in the last six years while also setting the scene for tackling all needs that remain unaddressed for the future.
This year cannot be summarised without mentioning the historic licensing of gene therapy for haemophilia A in Europe and haemophilia B in the United States. These therapies and related topics have been discussed at length for many years and are now no longer ‘five years away’. They are here now and may offer a new future for those who choose it. Such therapeutic advances undoubtedly come with new challenges for patients and patient organisations. Our responsibilities as patients to be fully informed and make the right decision for ourselves in collaboration with the multidisciplinary team has probably never been greater. Our challenges as patient organisations are how we support patients during this process and how we support the health care system so that each patient gets the same education and opportunity for decision-making as the other. The EHC has worked this year to guide how to deal with this topic through our Economics and New Technologies workshops, our gene therapy guidebook and the EHCucate App. These discussions will continue next year and many years to come, so if you need support, please reach out to the EHC anytime.
The programs and vision of what needs to be done and where we need to go for our community could not be achieved without the dedicated and passionate people who support us. Firstly, a big thanks to all the volunteers on all of our committees. Your efforts make a difference to us all. Secondly, our personal thanks to the current Steering Committee (including our former VP Finance Minette van der Ven). The last few months have required pivoting to make things work from a virtual world back to an in-person one. You are a wonderful team and always a pleasure to work with. Finally, we would like to say a huge thank you to the staff. This community has many dreams, hopes and expectations. There always needs to be someone to make it happen, and the EHC staff do just that, you make it happen for our community.
This has been an extraordinary year: for science, therapy, care, and our community. The coming holiday is a time for us to reflect, rejoice, and refuel after all that has been achieved (before we go again in 2023).
So we wish you all a wonderful holiday and see you again soon.
Declan Noone and Amanda Bok,
EHC President and EHC CEO