Haemophilia NI Represented at the EHC Conference in Istanbul

Two HNI trustees, Rachel Olliver, Secretary, and Mary Anne Jess, Trustee, were privileged to attend the European Haemophilia Consortium (EHC) Conference in Istanbul, Türkiye, from 2-4 October. The conference brought together national member organisations (NMOs), healthcare professionals, pharmaceutical companies, and patient representatives from across Europe, all united by a shared commitment to improving the lives of people living with bleeding disorders.

Throughout the conference, Rachel and Mary Anne had the opportunity to meet and speak with representatives from NMOs, industry partners, and patient advocacy groups.

One of the most inspiring aspects of the conference was hearing about advances in treatment options, particularly for people living with rarer bleeding disorders. There was a real sense of hope about the future and a shared determination to improve access to effective treatments and better outcomes for all. Sessions explored emerging therapies, patient experiences, and the challenges of diagnosis, all reflecting a commitment to improving quality of life.

For me, one of the most powerful parts of the conference was listening to patients share their journeys to diagnosis. Hearing these experiences was a reminder that there is still much work to be done around education, awareness, and signposting, so that people can receive the right diagnosis and support as early as possible. Education and prevention remain key priorities in helping people manage their condition and live well.

It was also incredibly empowering to hear stories of individuals with bleeding disorders achieving high levels of participation in sport. These experiences demonstrate what is possible when people have access to the right treatment, care, and support. Being active is important not only for physical and joint health, but also for confidence, independence, and overall wellbeing.

The conference was a powerful reminder that meaningful progress happens when patients, healthcare professionals, researchers, industry partners, and advocacy organisations work together towards a shared goal.

We returned from Istanbul feeling inspired, hopeful, and encouraged by the passion and determination of the global bleeding disorders community.

Stronger Together.