ERIN for the First Time, Definitely Not the Last

The last event of the 2022 calendar year, organized annually by the European Haemophilia Consortium, was attended by several dozen representatives from member countries across Europe, including the Czech Republic. We bring you a short report by participant Martin Ipser.

This year was exceptional in several respects. After a two-year hiatus, the pan-European conference of patients with inhibitors could finally take place in Barretstown, near the Irish capital Dublin. The event was made even more remarkable not only by the COVID-induced pause but above all by the expansion of topics to include other, even rarer, coagulation disorders. As a result, a new name was adopted for the event: ERIN, the European Rare and Inhibitor Network Summit.

Several developments led to this new concept. Firstly, there was a desire to bring additional rare bleeding disorders under their umbrella and thus help people living with these conditions. In recent years, great progress has been made in the treatment of hemophilia A with inhibitors. Emicizumab brought the long-awaited change to the lives of inhibitor patients and has been made available as an accessible treatment in most European Union countries. Thanks to this, it is now possible to direct efforts in other directions, whether it concerns improving care for Factor IX inhibitor patients, who are still waiting for an effective product (the closest appears to be concizumab, which has advanced to Phase III trials).

It is equally important to highlight other, even rarer, disorders of additional factors (for example Factor I, V, X), which occur in numbers one or two orders of magnitude lower, making it almost impossible to form associations within a single country. This is precisely where ERIN comes in, enabling cross-border meetings and information exchange among patients.

The treatment landscape for patients with hemophilia A and inhibitors has also undergone certain changes. These patients no longer have to primarily deal with bleeding problems and can instead focus on further improving their quality of life. Physiotherapy has come even more to the forefront, as has the possibility of additional procedures such as dental implants or the importance of psychological support. A new aspect in improving care is the role of the hemophilia nurse, who represents a central point in the care of people with hemophilia. They serve as a liaison in communication between us and the doctors -- someone who should have more time available for you than during a regular doctor's appointment. They listen to you and facilitate contact with other specialists, whether physicians, psychologists, or physiotherapists. Based on reactions from others, this role is still hard to imagine for most people with hemophilia, and in our country the key role is still held by the hematologist. However, it is certainly something worth discussing.

A certain culmination of this meeting was the drafting of a declaration, the points of which were contributed to by all participants. This document is intended to serve as a framework for the future work of the European haemophilia community.