EHC Now! Compilation Newsletter January – June 2019

With the summer months firmly upon us, in this week’s EHC Now! we reflect on the work and progress of the EHC, and our NMOs, during the first half of 2019. In our EHC Now! compilation report we have compiled our reports from our various workshops, conferences and Round Tables and also included updates on […]

EHC Now! EHC reports from the 2019 Leadership Conference

EHC reports from the 2019 Leadership Conference in Brussels, June 21-23, 2019. Commentary from EHC President Brian O'Mahony and representatives from the Netherlands, Ireland, Bulgaria, Azerbaijan, Serbia, the UK and the Republic of Georgia.

EHC Now! Update on First Youth Fellowship Project

With the summer months amongst us, it is perhaps a time to rest and rejuvenate for some, but for others it can be a time for new ideas and new learning. Following the success of our recent Women with Bleeding Disorders Conference – we, and indeed our community, experienced first-hand how important all groups in [...]

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 [...]