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, [...]

Update on the Ferring recall of desmopressin products

Update on the Recall of Desmopressin Nasal Sprays The European Haemophilia Consortium (EHC) would like to provide an update on its November 2020 statement on the international recall of all Ferring Pharmaceutical Limited nasal sprays containing desmopressin, including Octim®, Octostim®, Desmospray®, DDAVP Spray® and Stimate®. In February 2021, Ferring informed both the World Federation of [...]

EHC is looking for a project consultant

EHC is looking for a consultant for a new Think Tank project The European Haemophilia Consortium (EHC; www.ehc.eu) is looking for an independent consultant to undertake project consultancy work supporting the EHC Think Tank. Type of contract:          One-year consultancy contract, renewable Project start date:        March 2021 Summary The Consultant will be responsible for coordinating [...]

EHC introduces new educational app on rare bleeding disorders & novel therapies

The European Haemophilia Consortium (EHC) is thrilled to announce the development of its new educational app on rare bleeding disorders and novel therapies: 'EHCucate.' This app will be freely available on both Android and iOS smartphones & tablets. The EHC is currently calling on the patient community (patients, healthcare providers, care-givers,...) for testers of its [...]

Guidance on COVID-19 vaccination

Guidance from the World Federation of Hemophilia (WFH), European Association for Haemophilia and Allied Disorders (EAHAD), European Haemophilia Consortium (EHC), and U.S. National Hemophilia Foundation (NHF). It is important that haemophilia treatment centres, in close collaboration with patient organizations, take action to inform people with bleeding disorders about the COVID-19 vaccines and contribute to an [...]

FDA puts uniQure’s gene therapy clinical programme, HOPE-B, on hold following submission of safety report

December 21, 2020 – The European Haemophilia Consortium (EHC) has learned that uniQure announced that its haemophilia B gene therapy programme, including the pivotal, phase III HOPE-B study, has been placed on hold by the US Food and Drug Administration (FDA). The clinical hold was initiated following the submission of a safety report in mid-December [...]

Call for volunteers to join EHC Youth Committee

Call for volunteers to join EHC Youth Committee Candidatures have been extended and are now welcome until 15th January 2021 The EHC is currently looking for three youth candidates and an advisor to sit on its Youth Committee for the next three years (2021-2023) to support the work of the EHC Youth Leadership Workshop and other EHC [...]

Recall of Desmopressin Nasal Sprays to Affect Availability into 2021

In mid-August, the European Haemophilia Consortium (EHC) communicated an international recall of all FerringPharmaceuticals Limited nasal sprays containing desmopressin, including Octim®, Octostim®, Desmospray®, DDAVP Spray® and Stimate®, and reported that this may lead to shortages over the course of 2020. A follow-up Advisory from the World Federation of Hemophilia (WFH) indicates that these shortages will likely extend into mid- [...]