Congenital hemoglobinopathies: scientific updates and organization of services for Sickle Cell Disease
Sickle Cell Disease (SCD) is a disease until a few decades ago almost unknown in our countries and today, as a result of migratory flows to Europe, is considered one of the most relevant hematological emergencies in the world.
SCD is a serious disease having specific clinical and therapeutic needs and different outcomes depending on the level of care and health organization. Infact, in Low-Middle income countries, less than 50% of affected births will not survive beyond the 10th birthday that is not the case of high-income countries where treatments and facilities are largely available.
The event
The event, promoted by Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus, in collaboration with the Puglia Region Department for the promotion of health, social wellbeing and sport for everyone and the University Hospital Policlinico di Bari Department of Hematology with Transplantation, focused on hemoglobinopathies, the most common hereditary diseases from genetic defects in the world that have a specific interest for their diffusion in Puglia and throughout the Mediterranean area.
Specifically, the event aims to focus on Sickle Cell Disease (SCD), a disease until a few decades ago almost unknown in our countries and today, as a result of migratory flows to Europe, is considered one of the most relevant hematological emergencies in the world.
SCD is a serious disease having specific clinical and therapeutic needs and different outcomes depending on the level of care and health organization. Infact, in Low-Middle income countries, less than 50% of affected births will not survive beyond the 10th birthday that is not the case of high-income countries where treatments and facilities are largely available.
These aspects are tackled within a research project recently approved by the EU in the framework of the H2020-MSCA-RISE-2018 programme: the ARISE- African Research and Innovative Initiative for Sickle cell Education: Improving Research Capacity for Service Improvement project, coordinated by Fondazione Gianni Benzi onlus and the Guys and St Thomas’ NHS Foundation Trust in London with the participation of institutions in EU (Italy, France, UK, Cyprus and Greece) e non-EU countries (Nigeria, Lebanon, Kenya and USA).
Puglia is particularly qualified to contribute to the project because of its high skills and experiences in the haemoglobinopathies field, and for the presence of the Apulia Network of reference clinical centers coordinated by the Haematology University Department. Furthermore, the Benzi Foundation coordinates the HTA-THAL inter-regional registry and is involved in developing other national and international registers.
All the relevant stakeholders, including Health Authorities policy managers, patients and other public and private experts will participate to the event.
Organized by
Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus
Ematologia con Trapianto Universitaria, Azienda Ospedaliero Universitaria Policlinico di Bari
Supported by
Regione Puglia
This event is part of the Rare Disease Day® 2019 initiatives
Bookings
Bookings are closed for this event.
