EURORDIS launches new edition of its project “Support to European Federations”

EURORDIS has launched a new edition of its project "Support to European Federations". The programme aims at providing small, quick and flexible financial support for the organisation or participation in European meetings, training sessions, project development, workshops and conferences, to promote patient empowerment through capacity building and European networking between patient organisation representatives in disease [...]

EHC publishes new issue of periodic review on advances in haemophilia treatment

The European Haemophilia Consortium (EHC) has published the second issue (2019 Issue 1) of its 'Novel treatments in haemophilia and other bleeding disorders: A periodic EHC review.' In this issue we review any developments in novel technologies in haemophilia and other rare bleeding disorders that occurred since May 2018, when the first issue was published. [...]

EHC Now! Compilation Newsletter Sep ’18 – Jan ’19

The EHC Now! Compilation Newsletter gathering all EHC Now! articles from September 2018 to January 2019 is now out! In this edition, you will also find contributions from our Round Table sponsors. We hope you will enjoy reading it! Consult the EHC Now! Compilation Newsletter here. In this issue: A message from the EHC President […]

Roche joins the EHC PARTNERS programme

Today Roche becomes the third company to join the European Haemophilia Consortium’s (EHC) innovative programme: Procurement of Affordable Replacement Therapies – Network of European Stakeholders (PARTNERS). This programme aims to improve access to medicines for haemophilia in European countries that do not meet minimum standards of haemophilia care as set by the Council of Europe […]

Medscape Offers Haemophilia Gene Therapy Education for Health Care Providers

After many years, gene therapy in patients with haemophilia has started to show promising results in alleviating symptoms and improving the disease phenotype. Medscape has launched a new education program for providers seeking to enhance their knowledge of gene therapy for haemophilia. “Clinical Advances in Gene Therapy for Haemophilia” is presented through a collaboration between […]

EHC and EAHAD release joint statement on novel non-replacement therapies

Registration for the 2018 EHC Inhibitor Summit is now open

After the great success of the two previous Inhibitor Summits organised by the European Haemophilia Consortium (EHC), we are delighted to announce the third annual EHC Inhibitor Summit that will take place in Barretstown, Ireland from 6 – 9 December 2018. The purpose of the Inhibitor Summit is to offer a special time and space […]

Call for EHC Youth Committee 2018-2020 Candidates

The EHC is currently looking for three youth candidates and an advisor to sit on its Youth Committee for the next three years (2018-2020) to support the development of the EHC Youth Leadership Workshop and other EHC youth-related activities. This is a great opportunity to become involved in the planning, action and education events directed at the […]

European Principles of Inhibitor Management have been published

In spite of recent major advances in the understanding and treatment of inhibitor development in patients with haemophilia, multidisciplinary management of many of these patients remains suboptimal and highly heterogenous across Europe. Following a series of multidisciplinary meetings and a review of the literature, the European haemophilia community of health professionals and patients jointly defined […]

Haemophilia Care in Europe 2018 Survey

Dear NMOs, Every three years since 2009, the EHC has carried out ‘Haemophilia Care in Europe’ surveys in order to determine the level of haemophilia treatment and care in countries across Europe, as well as to assess to what extent the European Principles of Haemophilia Care are reflected in reality. The results have allowed us to […]