The EHC is excited to have signed a new partnership with the European Patients’ Academy of Therapeutic Innovation (EUPATI).

EHC joins EURORDIS–Rare Diseases Europe, the European Patients’ Forum and more than 70 additional patient organisations in calling on EU policymakers to safeguard strong and meaningful patient involvement at the European Medicines Agency (EMA) – including the retention of patient voting rights in the Committee for Medicinal Products for Human Use (CHMP).

The supply shortage or limited availability affects some of the EU Member States where the medicine is marketed, including Belgium, Denmark, France, Germany, Luxembourg and Sweden; in some Member States, English-labelled packs for certain doses will be available until the end of 2025.

The EHC joins the International Society on Thrombosis and Haemostasis (ISTH), European Association for Haemophilia and Allied Disorders (EAHAD), World Federation of Hemophilia (WFH), and other leading international organisations in issuing a statement and urgent call-to-action for a continued commitment to innovation and access in haemophilia care.

Haemophilia is often perceived as a condition that only affects men, and this outdated view continues to affect care, diagnosis, and understanding of the condition in women. To challenge this bias and raise awareness, the EHC is releasing two new resources on World Haemophilia Day 2025.