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Congenital hemoglobinopathies: scientific updates and organization of services for Sickle Cell Disease

Dipartimento promozione della salute, del benessere sociale e dello sport per tutti, Regione Puglia – V Piano
Via G. Gentile, 54
Bari, Italy
04/03/2019

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.

9:00 Participants registration
 
9:30 Welcome speeches 
A. Ceci, Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus
G. Specchia, Ematologia Con Trapianto Universitaria, Azienda Ospedaliero Universitaria Policlinico di Bari
A. Caroli, Regione Puglia, Dipartimento promozione della salute, del benessere sociale e dello sport per tutti, Sezione Strategie e governo dell’offerta, Servizio Strategie e governo dell’assistenza ospedaliera
 
Sessione IChair: M. Svelto, Distretto Tecnologico Pugliese H-BIO
 
The rare diseases networks: an organizational tool to support doctors and patients
A. Caroli, Regione Puglia, Dipartimento promozione della salute, del benessere sociale e dello sport per tutti, Sezione Strategie e governo dell’offerta, Servizio Strategie e governo dell’assistenza ospedaliera
 
Puglia Region Network of the Hemoglobinopathies: clinical and organizational tool
G. Specchia, Ematologia con Trapianto Universitaria, Azienda Ospedaliero Universitaria Policlinico di Bari
 
Molecular diagnostic platform and screening of the Hemoglobinopathies in Puglia Region
A. Vitucci – D. Campanale, Ematologia con Trapianto Universitaria, Azienda Ospedaliero Universitaria Policlinico di Bari
 
Sessione IIChair: G. Specchia, Ematologia con Trapianto Universitaria, Azienda Ospedaliero Universitaria Policlinico di Bari
 
Sickle Cell Disease: clinical aspects and perspectives of care for patients
B. Inusa, Guys and St Thomas’ NHS Foundation Trust, London
 
Sickle Cell Disease: experiences of therapy, prevention and screening
A. Maggio, Fondazione Piera Cutino, Palermo
R. Colombatti, UOC Oncoematologia Pediatrica, Azienda Ospedaliera di Padova
 
ARISE project – African Research and Innovative Initiative for Sickle cell Education: Improving Research Capacity for Service Improvement
F. Bonifazi, Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus
 
12:00 Coffee-Break
 
Round Table: How to contribute to the advancement of care and the organization of services for the SCD
Chair: V. Giannuzzi, Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus
L. Gesualdo, Scuola di Medicina e Chirurgia dell’Università di Bari
P. Giordano, Azienda Ospedaliero Universitaria Policlinico di Bari, EuroBloodNet
E. A. Graps, Agenzia Regionale strategica per la Salute ed il Sociale della Regione Puglia – AReSS, Area Valutazione delle tecnologie sanitarie e Ricerca
G. Del Vecchio – R. Conte, Registro HTA – THAL
G. Annicchiarico, CoReMaR Puglia – Coordinamento Regionale Malattie Rare
Representatives of patients Associations: Fondazione Italiana Leonardo Giambrone per la guarizione dalla Thalassemia, UNITED, Rete Associazione Malattie Rare Puglia – A.Ma.Re., Associazione Italiana Thalassemici – sezione provinciale di Bari, Associazione Microcitemici di Capitanata (tbc), Associazione Bambino Talassemico di Taranto (tbc), Associazione Thalassemici Brindisi, Associazione Thalassemici Lecce (tbc), Associazione Thalassemici Casarano (tbc), Associazione Thalassemici Manduria (tbc), Associazione Thalassemici Gallipoli (tbc).
 
14:30 End of the conference

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

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Bookings

Bookings are closed for this event.

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