EHC holds Innovation Summit

The first-ever EHC Think Tank Innovation Summit is in the books! After several virtual workshops, this one-day event allowed members of the Registries and Patient Agency workstreams to finally meet in person and develop their chosen concepts with the help of experienced facilitators and excellent input from external advisors. We’re grateful for the hard work [...]

New CEO joins the EHC Swiss NMO

A month ago, Camilla Wensig joined the Swiss Haemophilia Society as its new CEO, replacing Mr Jörg Kruger. In this newsletter, we wish to briefly introduce Camilla and welcome her to the European bleeding disorders community. Hello, I am Camilla Wensing, born in Sweden and living in Interlaken, Switzerland, since 1992. I am married to [...]

EHC Hungarian MNO elects new President

The Hungarian NMO recently welcomed a new President, Mrs Ildiko Kaslik, who follows Mr Zoltan Keszthelyi. Please welcome Mrs Kaslik to her new role and the European Bleeding Disorders Community. Ildiko describes herself as a “corporate finance professional, coffee addict, business coach, and now the president of the Hungarian Haemophilia Society.” Ildiko tells us that “As a [...]

EHC Belgian NMO elects new President

The EHC Belgian National Member Organisation, AHVH, has recently welcomed new board members, including a new President, Mrs Sarah De Witte. We want to introduce Mrs De Witte to the community in this newsletter edition. Please join us in welcoming Mrs De Witte to her new role.  As the new president, I would like to [...]

EHC Women and Bleeding Disorders Committee holds strategic retreat

In January 2023, a new three-year mandate of the EHC Women and Bleeding Disorder started. This Committee brings together volunteers from across Europe who actively raise awareness and address challenges women with bleeding disorders face. It is currently composed by Anna Tollwé (Chair, Sweden), Marion Bräuer (Austria), Yannick Collé (France), Karola Diosi (Hungary), Tatjana Markovic [...]

Meet Luis Teixeira, EHC CEO

We are thrilled to introduce you to Luis Teixeira, the new EHC CEO. Luis joined the EHC team in May 2023 and brings with him a wealth of experience working for different European associations and holding management positions with a focus on operations and finances. Luis, welcome to the EHC, can you tell us about [...]

Scott’s story

“Everything changed for me once I started talking.” In the framework of our #thisway campaign, the EHC interviewed Scott McLean (31), a patient with severe haemophilia A, who shared with us how haemophilia impacted his mental health, how he went from denial to acceptance, and how you as a patient can also look after your mental health. We [...]

A farewell to Amanda Bok from the EHC Steering Committee

After 10 impactful years at the EHC, Amanda Bok has left the position of CEO. Since her arrival in 2012 at the EHC, Amanda has left an incredible legacy. She helped the organization grow from one staff member to an amazingly skilled team of ten. Under Brian O’Mahony’s presidency, she managed to build up a […]

EHC, WFH and NHF Joint Statement on the Need for Adeno-Associated Virus (AAV) Antibody Screening in Persons with Haemophilia Considering Gene Therapy

  The following joint statement is issued by the World Federation of Hemophilia (WFH), the European Haemophilia Consortium (EHC), and the National Hemophilia Foundation (NHF). March 20, 2023 – With the marketing authorization of the first AAV vector-based gene therapy products for hemophilia A and B, patients, their caregivers, and healthcare professionals have many considerations [...]

A farewell to Amanda Bok

In this short article, we wish to acknowledge and thank the decade-long work that former EHC CEO, Amanda Bok, has carried out. Laura Savini, EHC Advocacy Lead, shares her thoughts on Amanda’s accomplishments and the most marked changes since her joining.   After ten years of dedicated work, Amanda Bok, former CEO, left EHC. The EHC volunteers […]