Webinar #4 ERN-EuroBloodNet Topic on Focus on CT : Constitutional thrombocytopenia related to GPIb-IX-V complex defects. Provided by: Prof Anna Savoia (University of Verona, Italy).
ERN-EuroBloodNet Topic on Focus on Constitutional Thrombocytopenia is an accredited European online educational program targeting health professionals organized by the ERN-EuroBloodNet and in partnership with the CRPP (French Reference Center for Inherited Platelet Disorders) and the Filière MHEMO (French Constitutional Bleeding Disorders Network).
The program consists of a cycle of webinars focused on Constitutional Thrombocytopenia developed in collaboration with three experts, Prof. Marie-Christine Alessi and Dr. Paul Saultier from Assistance Publique-Hôpitaux de Marseille (member of the ERN) and Dr. Mathieu Fiore from CHU Bordeaux.
The main objective of this program is to disseminate up-to-date knowledge among interested haematologists, internists, paediatricians, or other healthcare providers to give visibility to cutting-edge advances in the field of Consitutional Thrombocytopenia. This group of rare diseases is characterized by thrombocytopenia associated with a variable bleeding tendency. Some of these diseases are also associated with a predisposition to developing serious additional illnesses (e.g. haematological malignancies, renal impairment, deafness, immune deficiency). There is a high need for education addressing pathophysiology and molecular basis, diagnosis, complications, and treatments of this group of disorders.
Organisers:
The CRPP (French Reference Center for Inherited Platelet Disorders) was established in 2005 and accredited by the French Ministry of Health as part of the National Plan for Rare Diseases. This plan prioritizes “equitable access to diagnosis, treatment and care” for individuals with rare diseases. The CRPP is part of MHEMO (French Constitutional Bleeding Disorders Network), which includes centers specializing in hemophilia, von Willebrand disease and platelet disorders.
The CRPP’s mission is to improve patient care for constitutional thrombocytopenia and thrombopathies by developing advanced diagnostic tools, fostering research and building a strong care network. Key activities include creating practical guides and care recommendations, issuing patient care cards, holding multidisciplinary consultations and organizing patient-physician meetings in partnership with the platelet commission of the French Hemophilia Association.
MHEMO (French Constitutional Bleeding Disorders Network) is a Rare Disease Health Network focused on rare hemostasis disorders. It unites and coordinates a diverse range of stakeholders involved in the management of rare diseases. Together, these stakeholders collaboratively develop solutions to the challenges presented by rare haemostatic diseases. The network facilitates the implementation of initiatives across various themes, including patient management, coordination of translational and clinical research, treatment innovation, development of educational resources and training programs, as well as participation in and management of recommendations at both national and European levels.
ERN-EuroBloodNet is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States and covers Rare Hematological Diseases (RHD). Please visit the EuroBloodNet’s website to explore different initiatives we work on and how we can support patients and health professionals in the field of (RHD). [ Ссылка ]
The content of the ERN-EuroBloodNet’s YouTube channel is carried out within the framework of European Reference Network on Rare Haematological Diseases (ERN-EuroBloodNet)-Project ID No 101085717. ERN-EuroBloodNet is partly co-funded by the European Union within the framework of the Fourth EU Health Programme.
Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or European Health and Digital Executive Agency (HaDEA). Neither the European Union nor the granting authority can be held responsible for them.
