European Inhibitor Network

The European Haemophilia Consortium (EHC) strives to bring inhibitor patients together into one group and, through various support systems, create a strong community. Through the EIN, they have the opportunity to share experiences, advice, and support on a pan-European scale.

Goals

To achieve success, the EHC works very closely with member organizations in individual countries and other key partners. It has set the following main goals:

• The best possible understanding and description of the needs of inhibitor patients
• Creating a European standard for unifying treatment and overall care standards for inhibitor patients
• Supporting social and educational relationships between inhibitor patients and their care providers so that they mutually support and educate each other
• Supporting inhibitor patients in active and effective communication with all authorities that influence treatment and care

To fulfil these goals, an Inhibitor Working Group was established within the EHC, composed of people with hemophilia themselves, as well as parents, physicians, and all who come into contact with the issue. A very close connection with member hemophilia organizations and all other authorities that can influence developments in this area is essential for the group.

Three main tasks of the European Inhibitor Network:

1. Introduction of European standards of treatment and care
2. Opening of mutual communication channels
3. Creation of tools and materials for advocating the needs of inhibitor patients

1. European Treatment Standards

Ten principles for managing hemophilia with inhibitors were developed, emphasizing the importance and benefits of a centralized multidisciplinary approach. These principles will serve as a foundation for improving multidisciplinary and practical care. The fulfilment and adherence to each of these principles should have a positive impact on the lives of people with hemophilia and inhibitors. A video and poster outlining these principles have been prepared to accompany the article published in the Orphanet Journal of Rare Diseases, which can be used as a tool for advocating the interests of inhibitor patients.

2. Mutual Communication

EHC Inhibitor Summit

The purpose is to offer people with hemophilia who have inhibitors, their families, and caregivers the opportunity to educate themselves and provide mutual support so that quality of life continues to improve. A very important aspect is finding support and understanding from people in a similar life situation. Since the first summit in 2016, more than 200 people with hemophilia and inhibitors and their family members from more than 17 countries have met to share their knowledge. The summit has proven to be invaluable for them. The next one is scheduled for December.

Inhibitor Ambassadors

They are appointed by the EHC and national member organizations. The main role of an ambassador is to strengthen the entire community in Europe by acting as an active link between inhibitor patients in each country and the EIN itself. On the home front, they will strive to involve inhibitor patients as much as possible in all activities of the patient organization. The Czech Hemophilia Society also has its representative in the EIN -- long-standing member Jan Pucek. For this purpose, an email address czech.republic@inhibitor-network.eu has been set up, which serves for communication between the EIN, the national member organization, and inhibitor patients in the Czech Republic.

Chat & Ask an Expert

As part of the EIN, an internet platform was created with the aim of building an online community and facilitating the mutual exchange of opinions and supporting social and intellectual connections among all. The online community is based on three main principles: understanding, education, and contact. Information and expert articles addressing various aspects of life are available online. A chat platform is open to facilitate discussions between inhibitor patients and hemophilia care experts every month on an interesting topic. More information at www.inhibitor.ehc.eu.

The first in a series of video conferences "Happy hour with an expert in haemophilia care" will take place on 1 November at 7:00 PM Central European Time. The topic is "Proper Dental Care," the guest will be Irish physician Allison Dougall, and you can participate too. However, brief prior registration is required on the European Haemophilia Consortium website at this link. The video conference will be held in English.

3. Materials for Inhibitor Patients

For the interaction of all community members, the EHC has created several tools designed to achieve optimal therapy and healthcare. The EIN online platform provides specific educational material for each interest group -- patients, healthcare professionals, and national patient organizations. **It provides information on **currently available treatment and other developments, such as physiotherapy or psychosocial issues. Many approaches obtained from national federations can also be applied on a pan-European level. The principles represent a foundation that will help with treatment and optimal care for all inhibitor patients, regardless of their country of residence.