Formed in March 2024, the Working Group aims to extend our knowledge of patients with very rare coagulation factor deficiencies with focus on demographics, clinical bleeding phenotype, laboratory phenotype, genotype characterization, treatment strategy and quality of life; to improve health care, concerning diagnosis, genetic counseling and treatment in patients with very rare coagulation factor deficiencies; to define research priorities with the aim to reach all areas in Europe, independent of the socio-economic background; and to facilitate educational sessions for the broad audience of the EAHAD.
EAHAD Workgroup Very Rare Coagulation Factor Deficiencies – Survey for Healthcare Professionals and Patients
Help us understand current practices in the diagnosis, treatment, and management of very rare coagulation factor deficiencies. The VRCFD Working Group aims to gather insights on screening methods, genetic analysis, peri-surgical and general treatment plans, follow-up care, and family screening strategies. For patients, there is a section to share their personal experiences, including the frequency and location of traumatic or spontaneous bleeds, as well as your regular hemostatic treatment. Your input will contribute to enhancing patient care and advancing research in this area.