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 […]
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
