WFH and EHC release joint statement on AstraZeneca COVID-19 vaccine

EMA, ISTH, WHO and many countries recommend benefit of COVID-19 vaccination outweighs the risks  Risks of adverse events no higher in people with bleeding disorders The European Medicines Agency (EMA) Pharmacovigilance Risk Assessment Committee (PRAC), following investigation of isolated cases of unusual blood clotting with low blood platelets that have occurred in a small number [...]

Call for additional volunteer to join the EHC VWD Working Group

‘I never realised the impact my diagnosis had on me while I was growing up, it was always on my mind, I always worried about a bleed. Now with more education, support and treatment my life has totally changed. That’s what happened for me with the help of my NMO – if we can even […]

EAHAD Physiotherapists Network is looking for members

The European Association for Haemophilia and Allied Disorders (EAHAD) is looking for physiotherapists interested in haemophilia and other rare bleeding disorders to join its European Physiotherapists Network. EAHAD is a multidisciplinary association of healthcare professionals providing care for individuals affected by rare bleeding disorders. The EAHAD European Physiotherapists Network is an initiative of its Physiotherapists [...]

World Oral Health Day 2021

Putting a spotlight on the mouth - World Oral Health Day 2021 As you may know, this patient population, if left untreated, can experience significant bleeds, including in the mouth. However, when properly managed, these patients shouldn’t face any increased complication in dental health. Unfortunately, many patients and treating dentists fear each other, often due [...]

Position Statement on COVID-19 Astra Zeneca Vaccine

The European Haemophilia Consortium (EHC) has been closely monitoring the recent safety signal of blood clots in some recipients of the COVID-19 Vaccine AstraZeneca and wishes to inform its community of the following. The European Medicines Agency (EMA) safety committee, PRAC (Pharmaceutical Risk Assessment Committee), following its preliminary review of this safety signal, concluded that [...]

New member on the EHC Steering Committee

We are pleased to announce that Manon Degenaar-Dujardin, from the Dutch NMO, has been co-opted by the EHC Steering Committee! As many will already know, Manon is Vice-President of the Dutch NMO and has been chairing the EHC von Willebrand Disease Working Group since 2020. Manon will be a wonderful asset to the EHC Steering [...]

EHC kickstarts Think Tank and welcomes new team member

The European Haemophilia Consortium (EHC) is delighted to announce its newest project, the EHC Think Tank. This initiative aims to modernise the EHC advocacy activities by engaging with key opinion leaders and creating people-and-change-agent-driven solutions for the rare bleeding disorders community. The EHC Think Tank seeks to engage multiple healthcare stakeholder perspectives in co-designing trajectories of [...]

Vaccination against COVID-19: Rationale, modalities and precautions for patients with haemophilia and other inherited bleeding disorders

Kaczmarek R, El Ekiaby M, Hart DP, et al. Vaccination against COVID-19: Rationale, modalities and precautions for patients with haemophilia and other inherited bleeding disorders. Haemophilia. 2021;00:1–4. First published: 02 March 2021 Download the PDF version or read online on Haemophilia journal Authors Radoslaw Kaczmarek1, Magdy El Ekiaby2,3, Daniel P. Hart2,4,5, Cedric Hermans2,6, Mike Makris2,7, Declan Noone2,8, Brian O’Mahony2,9,10, [...]

EHC Statement on Mononine voluntary recall

The European Haemophilia Consortium (EHC) was informed of a voluntary recall of a series of batches of human coagulation factor IX, known under the brand name of "Mononine," and manufactured by CSL Behring. This voluntary recall is a precautionary measure due to a manufacturing deviation (i.e., a change) during the filling process. Following extensive testing [...]

Joint statement on Fitusiran update following EAHAD 2021 Congress

Fitusiran update following EAHAD 2021 Congress Fitusiran is an RNA drug that can prevent antithrombin protein from being made in the liver. Antithrombin is an important brake for the coagulation system. Insufficient amounts of circulating antithrombin in normal adults lead to thrombosis. In persons with haemophilia (PWH) A or B, who don’t have sufficient clotting, [...]