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, organizes the conference "Congenital hemoglobinopathies: scientific updates and services organization for the sickle cell disease", planned in Bari on March 4 at 9 am at the Puglia Region conference room.

All the relevant stakeholders, including Health Authorities policy managers, patients and other public and private experts come back to discuss after a long time scientific updates and, above all, organization of services, to identify a common and integrated approach to hemoglobinopathies and, in particular, to the sickle cell disease.

Hemoglobinopathies are 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. In particular, the Sickle Cell Disease (SCD) is a serious 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 has a 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 is organized in the framework of the Rare Disease Day 2019 and is composed of two different sessions. In the first one, dedicated to the SCD scientific updates and tools for clinicians and patients also created by Puglia Region, will participate: Antonella Caroli, Puglia Region Department for the promotion of health, social wellbeing and sport for everyone; Giorgina Specchia,University Hospital Policlinico di Bari Department of Hematology with Transplantation; Baba Inusa, Guys and St Thomas' NHS Foundation Trust; Aurelio Maggio, Franco e Piera Cutino Foundation; Raffaella Colombatti, Padua Hospital Pediatric Oncohematology Department.

In the second part of the event, the most important local and national Patients Associations will debate with academia and health authorities on how to contribute to the advancement of care and the organization of services for the SCD.

More info on the agenda and the registration form is available [here].

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