People living with fibrinogen disorders face a range of bleeding and clotting challenges that can vary significantly depending on the specific type and severity of the condition. Fibrinogen plays a crucial role in the formation and stabilisation of blood clots, and abnormalities in its quantity or function can lead to an increased risk of bleeding, as well as, in some cases, thrombotic complications. Because these disorders are rare, diagnosis can sometimes be challenging, and individuals and families may face uncertainty around treatment, medical procedures, and everyday life.
Organised by the EHC European Rare and Inhibitor Network (ERIN) Committee, in collaboration with the European Association for Haemophilia and Allied Disorders (EAHAD), this webinar aims to raise awareness of fibrinogen disorders, exploring both the clinical aspects of diagnosis and management and the lived experiences of people affected by these rare conditions. The session will provide an opportunity for clinicians, patients, caregivers, and the wider bleeding disorder community to exchange knowledge and perspectives.
The online event will take place on Wednesday, 11 November at 18:00 CET. Dial-in details will be shared with registered participants one day in advance.
Featured Speakers:
- Dr Alessandro Casini – Associate Professor at the Department of Medicine, University of Geneva (UNIGE), and Senior Physician at the Angiology and Haemostasis Service at Geneva University Hospitals (HUG), Switzerland. He leads the “Fibrinogen and Fibrin Clot Structure” laboratory, which develops translational approaches to better understand and treat fibrinogen disorders. His clinical and research work focuses on rare bleeding disorders, with particular expertise in inherited fibrinogen abnormalities.
- Nathan Roubaty – Patient Representative, Switzerland
Facilitator:
- Stefan Radovanović – EHC Patient Engagement and Community Lead
The session will bring together clinical expertise and patient experience to support a deeper understanding of fibrinogen disorders, including the challenges of diagnosis, treatment, and living with these rare conditions. It will also provide an opportunity for participants to engage in discussion and learn from both medical and lived perspectives.