In Memoriam of Dr Gabriele Calizzani

It is with shock and deep sadness that we learned of the passing of Dr Gabriele Calizzani. Gabriele was a deeply valued, dedicated and active member of the Italian and European bleeding disorder communities. Both doctor and patient himself, he dedicated himself tirelessly to his national patient organisation FedEmo, serving as its President from 2008-2014, […]

EHC Statement on Desmopressin Nasal Sprays availability

11 August 2020 EHC Statement on Desmopressin Nasal Sprays availability The European Haemophilia Consortium (EHC) has become aware of an international recall of all Ferring Pharmaceuticals Limited nasal sprays containing desmopressin, including Octim®, Octostim®, Desmospray®, DDAVP Spray® and Stimate®. This may lead to shortages over the course of 2020. About Desmopressin nasal sprays Desmopressin acetate [...]

EHC-EAHAD Joint statement on AAV8-based ASPIRO clinical trial

Joint statement on AAV8-based ASPIRO clinical trial The European Haemophilia Consortium (EHC) and European Association for Haemophilia and Allied Disorders (EAHAD) have become aware of two deaths in patients with X-linked myotubular myopathy (XLMTM) on an AAV8-based gene therapy (AT132) in the phase 1/2 ASPIRO[1] clinical trial conducted by Audentes, a subsidiary of Astellas. EHC [...]

EHC-EAHAD Joint position statement on Gene Therapy

EAHAD-EHC Joint Statement on: Promoting hub-and-spoke model for the treatment of haemophilia and rare bleeding disorders using gene therapies For the past three decades, haemophilia A and B have been treated using FVIII and FIX replacement concentrates, and their treatment and care has been managed through comprehensive or standard haemophilia treatment centres. We are now in [...]

EHC exercise campaign #thisway goes virtual

EHC is back with its physical activity campaign #thisway to promote the importance of staying physically active, even in times of confinement. Join us every last week of the month for a Facebook live session in which a physiotherapist will join us for tips, exercises and lots of fun! The first virtual #thisway session will [...]

EHC-EAHAD Joint Statement on Home Delivery of Treatment during COVID-19 Pandemic

Brussels, 16 April 2020 The European Haemophilia Consortium (EHC) and the European Association for Haemophilia and Allied Bleeding Disorders (EAHAD) have published today a joint statement on home delivery of treatment products and the management of the supply chain during the COVID-19 pandemic.  The European Haemophilia Consortium (EHC) and the European Association for Haemophilia and [...]

Call for researchers in educational projects on FVIII immunogenicity

EDUC8 is an Innovative Training Network (ITN) funded by the European Union Horizon 2020 Programme. The EDUC8 training network represents a novel, pioneering platform for studying the immunogenicity of therapeutic pro-coagulant factor VIII (FVIII) in patients with haemophilia A (HA). It includes leading scientists from academia and industry. The EDUC8 training network offers a total [...]

In Memoriam: Patrick Finders-Binje

It is with great sadness that we have learned about the passing of Patrick Finders-Binje, taken too soon from his family and loved ones by the COVID-19 pandemic. Patrick was well known in our Belgian and European bleeding disorder communities. He was Secretary of the Belgian Haemophilia Society (AHVH) for four years and, since 2011, [...]

EHC cancels its events until June 2020

It is with great sadness that we announce that in light of the current COVID-19 pandemic, the EHC Steering Committee has decided to cancel all EHC events until June 2020 included. In order to continue to fulfil our missions of raising awareness about bleeding disorders and supporting our national member organisations, most of the planned [...]

In Memoriam of Dr Theis Bacher

It is with great sadness that the EHC has learned about the passing of Dr Theis Bacher on March 13th 2020. Theis Bacher was heavily involved in the Danish NMO – Danmarks Bløderforening – for many years, where his national community benefitted from both his professional experience as a doctor and his personal experience as […]