On July 11-12, the EHC was on its first country visit under Miguel Crato’s presidency mandate. The EHC joined forces with the World Federation of Hemophilia (WFH) and paid a visit to its Bosnian and Herzegovinian National Member Organisation (NMO) to assess the situation for patients with bleeding disorders and caregivers in the country and discuss with decision-makers ways to improve care and quality of life for all.
The agenda was packed with official meetings and exchanges about the current state of treatment and care in Bosnia and Herzegovina for patients with bleeding disorders. On the first day, a series of impactful meetings with patients and healthcare providers took place. Among the attendees were:
- Amar Muratović, President of the BH Haemophilia Society
- Karine Kocharian, WFH Regional Manager
- Marko Marinic, President of the Croatian Haemophilia Society and WFH Board Member
- Dr Emina Suljović-Hadžimešić, Head of the Sarajevo Hemophilia Treatment and Comprehensive Care Center
- Olivia Romero Lux, CEO of the EHC
The presentations from the EHC and WFH sparked important discussions on the current state of treatment and care in Bosnia and Herzegovina, particularly at the Sarajevo Hemophilia Treatment and Comprehensive Care Center.
The EHC’s commitment to enhancing haemophilia and other bleeding disorders care continued as the delegation visited the Haematology Clinic of Sarajevo. Here, we were joined by the experts:
- Dr. Lejla Ibirčević-Baltić, Chief Clinic Officer, Clinic for Haematology
- Suzana Tihic, Clinical Biochemistry with Immunology Department
The morning session included a comprehensive presentation of the multidisciplinary care team, followed by an informative tour of the Haematology Clinic and the Clinical Biochemistry Department. In the afternoon, we engaged in productive discussions with representatives of the Fund Institute, focusing on crucial objectives such as assessing the needs of healthcare providers, advocating for better access to care for patients outside Sarajevo, updating the list of drugs under the “direct budget,” and including patient representatives in the procurement process.
Throughout this journey, we were inspired by the very committed and engaged multidisciplinary team at the Sarajevo Hemophilia Treatment and Comprehensive Care Center. Their dedication gives us high expectations for the upcoming Comprehensive Care Centre Certification renewal by EAHAD, especially with the potential approval of dedicated facilities.
We especially also want to thank our Bosnian and Herzegovinian NMO Udruženje Hemofiličara Bosne i Hercegovine for the warm welcome and organisation of this visit. We are optimistic about the future and committed to continuing our efforts to ensure better care and support for all patients living with bleeding disorders.
The EHC remains committed to its mission of supporting its members at national levels and will continue providing even stronger support to better address their specific challenges and make the most out of the opportunities.
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.
