EHC Now! Pain Management Round Table, June 11, 2019 – Brussels

Jamie O’Hara, UK Haemophilia Society; Hortensia de la Corte Rodriguez, Hospital Universitario La Paz, Madrid; Pier-Luigi Solimeno, University of Milan; Miguel Crato, EHC Steering Committee; Lotte Haverman, Amsterdam UMC; Nathalie Roussel, University of Antwerp; Paul McLaughlin, Royal Free London NHS Foundation Trust Frank and open Q&A about alternative treatments, physical activity, opioids, physiotherapy; comparing various [...]

EHC Now! PARTNERS Progress Report – Year 1

The Rising Tide Lifts all Boats EHC is pleased to announce the publication of the Procurement of Affordable Replacement Therapies - Network of European Relevant Stakeholders (PARTNERS) programme progress report, year 1 (2018). A real partnership initiative, this programme is an innovative approach to the sustainable procurement of treatment products for haemophilia A and haemophilia [...]

 EHC Now! Extensive Reporting from the First European Women and Bleeding Disorders (WBD) Conference, May 24-26, 2019, Frankfurt

It was an idea that was long overdue: a conference, discussion and information-sharing platform for women with bleeding disorders. Abounding with misconceptions, general disregard and a lack of information, women with bleeding disorders have been sadly ignored and underrepresented in our communities. The First European Women and Bleeding Disorders (WBD) Conference, May 24-26, 2019 in [...]

EHC Now! Half-Year Progress Report 2019

This week we are preparing for the hugely anticipated 1st European Women and Bleeding Disorders Conference in Frankfurt, Germany. As we approach the mid-year point of 2019, we reflect and report on our work and progress in the first half of 2019. The second half of 2019 promises to be as productive and exciting. January [...]

EHC Now! Barriers and challenges faced by women with congenital bleeding disorders in Europe: Results of a patient survey conducted by the European Haemophilia Consortium

The European Haemophilia Consortium (EHC) is pleased to announce the publication of Barriers and challenges faced by women with congenital bleeding disorders in Europe: Results of a patient survey conducted by the European Haemophilia Consortium by EHC’s PARTNERS Consultant Declan Noone, EHC Steering Committee Member and Women’s Committee Head Naja Skow-Rasmussen,  University Medical Center Utrecht’s [...]

EHC Now! European Parliament Elections – May 23 – 26, 2019 / MEP Rare Bleeding Disorders Group

In the field of rare diseases, the European Union has an extended added value due to its ability to coordinate Member States’ resources, information, expertise and knowledge, all vital elements for rare bleeding disorders. To this end, we at the EHC are working towards developing meaningful political relationships, not only at the Member State level [...]

EHC Now! The Netherlands: Discussion on Women with Bleeding Disorders on Dutch National TV

European Haemophilia Consortium (EHC) Women and Bleeding Disorders Committer member and Youth Leadership alumni Evelyn Grimberg took to the Dutch airwaves to discuss women and bleeding disorders. The nationally-syndicated show highlighted the reality that women with bleeding disorders, even in countries with advanced medical systems like the Netherlands, are often undiagnosed or under-diagnosed. The European [...]

EHC Now! Clinical trials in focus

Three years ago, while filming short videos explaining European Inhibitor Network, we were looking forward with great hope for treatment options for people with inhibitors to finally become available, after years of very limited choice. What is available today for people with inhibitors would have not been possible without all those who took part in […]

EHC Now! EHC’s World Haemophilia Day Ceremonies and Launch of Every Day is a Winding Road #EHCelebrate from Dublin

For photos of the event, see HERE Officially, World Haemophilia Day is April 17. This is the birthday of World Haemophilia Foundation founder, Frank Schnabel. EHC celebrates this event a day earlier to accommodate a world-wide week of activity. On April 16 from Dublin, members of our community gathered to honour not only World Haemophilia [...]

EHC Now! Youth Leadership Workshop, Amsterdam, April 5 – 7, 2019

It’s appropriate that the Youth Leadership Workshop concluded on World Health Day (April 7). Healthcare is a universal right and EHC is part of the global effort to ensure that all patients, regardless of their nationality, economic background or health status, receive the care they deserve. The Youth Leadership Workshop aims to train the next [...]