EHC Now! Meet the EHC Women and Bleeding Disorders Committee

In 2019, the EHC renewed the mandate of its Women and Bleeding Disorders Committee for a second term. A call for volunteers was launched and eight volunteers from across Europe were selected to advise and continue to spearhead EHC activities for women with rare bleeding disorders.  Earlier in March, this committee met in Copenhagen to [...]

EHC Now! Introducing the EHC VWD Platform & Working Group!

In this week’s EHC Now! we are delighted to announce our newly formed von Willebrands Disorder (VWD) Working Group which was established in February 2020, to lead the work of the EHC VWD Platform for Europe. Since 2015, the EHC has made efforts throughout our various programmes and activities to address the gaps in the [...]

EHC Now! The work of the French NMO Women’s Committee

On 8 March, the world will mark International Women's Day and for this week's EHC Now! We look at how the Women's Committee of the French Haemophilia Association came about to support women affected by bleeding disorders in France. This committee is now well-established and extremely active, but this is the result of a long [...]

Advanced Medicinal Therapies – our takeaways from discussions at the European Parliament

On 19th February 2020 EHC took part in “Advanced medicinal therapies : Step up the healthcare revolution now” event at the European Parliament and here is what we took back home from this meeting. The event dedicated to Advanced Medicinal Therapies (ATMPs) was organized by EuropaBio and took place at the European Parliament. ATMPs are […]

EHC talks registries at the European Parliament

For this week's EHC Now! we sit down with EHC President Declan Noone to discuss the Round Table event on Registries and Clinical Outcomes. On 18 February, the European Haemophilia Consortium (EHC) held a Round Table of Stakeholders at the European Parliament in Brussels on "haemophilia registries and clinical outcomes." Laura Savini (LS): Declan, first [...]

EHC Now! Report from the 2020 EAHAD Congress

On 4 to 7 February 2020, the European and international haemophilia community met in Den Haag, the Netherlands for the 2020 Congress of the European Association of Haemophilia and Allied Disorders (EAHAD). The European Haemophilia Consortium (EHC) and EAHAD have had a longstanding working relationship defined by a Memorandum of Understanding (MoU), shared objectives - [...]

EHC NOW! An update from EHC Headquarters January 2020!

However, without the voices to amplify it is rather unlikely to be heard at all, or say anything that is meaningful. Similarly, the EHC without its NMOs would be without its main purpose. To ensure that the work of the EHC remains relevant for our members, it is crucial that good communication between the EHC […]

EHC Now! Nastassia Kisialeva joins EHC’s team

The EHC team is delighted to welcome Nastassia Kisialeva who joins us as Communications and Public Policy Officer. Nastassia or Nastia - as she's nicknamed - will work together with Laura Savini to support EHC's communications and public policy activities. As the EHC heads into a strategic retreat this weekend to look at its work [...]

EHC Now! Be part of our team – EURO 2020: Adapted Football & Physical Activity Camp!

EHC Now! Be part of our team – EURO 2020: Adapted Football & Physical Activity Camp! As you can see 2020 is going to be a big & busy year for the EHC with many events and activities to support, empower, educate and build lasting friendships in our community!! In this week’s EHC Now! we […]

EHC Workshop on New Technologies in Haemophilia Care 2019

Over the past weekend some 70 delegates from across Europe gathered in sunny Athens to hear all about the latest advances in new treatments in haemophilia. This was the seventh edition of the workshop and the most attended, which underscores the growing interest and educational need. This workshop is one of several activities developed by [...]