FDA places the Pfizer/Sangamo Therapeutics phase 3 AFFINE haemophilia A gene therapy study on clinical hold

November 5, 2021 – On Wednesday, November 3, the U.S. Food and Drug Administration (FDA) placed the Pfizer/Sangamo haemophilia A gene therapy programme, including the pivotal phase 3 AFFINE study(NCT04370054), with giroctocogene fitelparvovec (SB-525 or PF-07055480), on clinical hold until review of a proposed protocol amendment. (Sangamo news release). This decision came subsequent to Pfizer [...]

EHCucate goes live

The EHC is delighted to announce its new educational app EHCucate. Information on rare bleeding disorders and novel therapies is abundant. It comes in various forms, making it even more complicated when searching for answers that can be complex and confusing! This is why the EHC has processed years of research and publications from reliable [...]

European principles for women and girls with bleeding disorders published

The European Haemophilia Consortium (EHC) is delighted to inform you that the European principles of care for women and girls with bleeding disorders were published in the scientific journal Haemophilia. This publication results from work led by a multidisciplinary working group composed of the Committee on Women and Bleeding Disorders of the European Association for [...]

WFH and EHC sign MoU

The World Federation of Hemophilia (WFH) and the European Haemophilia Consortium (EHC) are pleased to announce that they have signed a new Memorandum of Understanding (MoU) to update the way both organizations work together to improve the welfare of people with haemophilia and other inherited bleeding disorders in Europe. Both organizations operate with the same [...]

EHC is looking for a public policy and communications officer to join our team!

The European Haemophilia Consortium (EHC) is looking for an experienced, analytical and passionate European public policy and communications officer to join its small, dynamic team of staff and volunteers. Type of contract:       Full-time, one-year employee contract, renewable Location:                      Brussels, Belgium Reporting to:              CEO Start date:                    September-November [...]

Take-aways from the EHC webinar on Women and Bleeding Disorders

On 29 May 2021, the European Haemophilia Consortium (EHC) Committee on Women and Bleeding Disorders held a webinar on three topics about women and bleeding disorders, including: Preparing for menarche, Fertility, and Ageing. Here below is a summary of the discussions and take-away messages for each session. This event was developed by the EHC Women [...]

Join the EHC for #thisway campaign in 2021!

This year, alongside the physical activity we will look into other aspects of wellbeing - mental, emotional, social and environmental! We invite you to come #thisway to wellbeing with us! Be active! Connect! Take notice! Give! Keep learning! In the warm and green months of the year, leading up to the EHC Conference in October, [...]

The UK contaminated blood enquiry resumed yesterday

Politicians in the UK to appear before contaminated blood public inquiry The Infected Blood Inquiry resumed its hearings yesterday (18 May) in London with politicians past and present called to give evidence. The inquiry, which opened in 2018, investigates the contaminated blood scandal of the 1970s and 80s, which resulted in 4,689 people with haemophilia [...]

EHC update on COVID-19 vaccines

17 May 2021 The European Haemophilia Consortium (EHC) continues to closely monitor developments with the COVID-19 pandemic and associated roll-out of COVID-19 vaccines. The EHC wishes to inform its community of the following recent Notice by French government authorities. On May 7th French vaccination authorities, Le Conseil d’Orientation de la Stratégie Vaccinale, issued a recommendation [...]

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 [...]