Training

5th European Symposium on Rare Anaemias

1st Italian Thalassaemia Meeting for Patients and Health Professionals

2013 November 15-16

Ferrara (Italy)

ENERCA, the Italian Federation of Associations for Thalassaemia and Sickle Cell Disease (UNITED) and the Thalassaemia International Federation (TIF) organized the 5th European Symposium on Rare Anaemias and 1st Italian Thalassaemia Meeting for Patients and Health Professionals. It is a unique chance to access up-to-date knowledge and work in a transversal environment.

The main targets of this event are:

  • To provide an overview on prevention, diagnosis and clinical management of thalassaemia and other haemoglobinopathies.
  • To provide the current gene therapy approach for thalassaemia treatment.
  • To review current situation of other rare anaemias patient’s community.
  • Interactive session for patients: For the first time in Italy, patients with rare anaemias will have the opportunity to join, in a common meeting, the most experienced European health professionals in these particular disorders.

Symposium Presentations

WELLCOME SESSION

  • M. Bianchi and M.R Gamberini (Italy)
    Opening Message from the Italian United
  • M. Zappaterra (Italy)
    Opening message from the President of Provincia of Ferrara
  • M. Angastiniotis (Cyprus), Thalassemia International Federation (TIF)
    Haemoglobinopathies on the move: Is Europe ready? Health and migration policy
    Abstract (190kb)
  • J .L Vives Corrons (Spain), European Network for Rare and Congental Anaemias (ENERCA)
    The new e-ENERCA Project: Towards an e-health based European Reference Network (ERN)
    Presentation (4.910kb); Abstract(296kb)
  • A. Montserrat (Luxembourg),Policy Officer for Cancer and Rare Diseases. European Commission
    Opening message from the European Commission

Session I. EPIDEMIOLOGY AND PREVENTION OF HAEMOGLOBINOPATHIES


Chairperson: B. Gulbis (Belgium)
  • P. Aguilar Martinez (France)
    Haemoglobinopathies.Current situation of Genetic Diagnosis and Counseling
    Presentation (13.800kb); Abstract(90kb)
  • B. Gulbis (Belgium)
    Prevention of sickle-cell disease. A challenge for increasing patient’s quality of life Presentation (4.370kb); Abstract(191kb)
  • M. Angastiniotis (Cyprus)
    Multi-disciplinary care of haemoglobinopathies
    Presentation (1.180kb); Abstract(174kb)
  • M.R. Gamberini/ A. Ravani (Italy)
    Steps needed to move forward in Italy. A professional point of view
    M.R. Gamberini Presentation (1.370kb); A. Ravani Presentation (1.370kb)
  • L. Brunetta (Italy)
    Steps needed to move forward in Italy. A patient point of view
    Presentation(458kb); Abstract(53kb)

Session II. THE LABORATORY DIAGNOSIS OF RARE ANAEMIAS


Chairperson: P. Bianchi (Italy)
  • B. Gulbis (Belgium)
    The diagnosis of haemoglobinopathies: From protein to genome
    Presentation (4.480kb)
  • C. L. Harteveld (The Netherlands)
    New technologies for the diagnosis of thalassemia
    Presentation (3.340kb); Abstract(91kb)
  • P. Bianchi (Italy)
    Recent progress in the diagnosis of RBC membrane and enzyme disorders
    Presentation (2.530kb); Abstract(91kb)
  • M. Sanchez (Spain)
    Hereditary iron metabolism disorders. Where we are?
    Presentation (4.950kb); Abstract (113kb)

Session III. CLINICAL MANAGEMENT OF HAEMOGLOBINOPATHIES


Chairperson: C. Borgna (Italy)
  • A. Piga (Italy)
    The Thalassaemia syndromes
  • L. de Franceschi (Italy)
    The Sickle cell syndromes
  • D. Cappellini (Italy)
    Iron Overload: Clinical complications and new diagnostic procedures
    Presentation (438kb); Abstract(58kb)
  • G. Dusheiko (United Kingdom)
    Liver disease and thalassaemia: The Treatment to contrast HCV’s complications
  • A. Giusti (Italy)
    Osteoporosis and Pain
    Presentation (742kb); Abstract(10kb)

HONORARY LECTURE


INTERACTIVE WORKSHOP WITH PATIENTS


Chairperson: A. Piga (Italy)
  • D. Cappellini (Italy)
    New Chelators
    Presentation (711kb); Abstract(93kb)
  • G. Dusheiko (United Kingdom)(Italy)
    The Sickle cell syndromes
  • V. De Sanctis (Italy)
    Endocrinological Problems
  • A. Giusti (Italy)
    Osteoporosis and Pain
    Presentation (742kb)

Session IV. RECENT KEY ADVANCES IN RARE ANAEMIAS


Chairperson: Giuliana Ferrari (Italy)
  • A. Iolascon (Italy)
    Erythropoietic failure syndromes in paediatrics
    Presentation (5.190kb); Abstract (80kb)
  • A. Hill (United Kingdom)
    Paroxysmal Nocturnal Haemoglobinuria (PNH)
    Abstract(10kb)
  • M. Sadelain (United States)
    Gene therapy approaches for the cure of thalassemia
  • FP7 Projects in Rare Anaemias
    “Thalamoss” - R. Gambari (Italy)
  • FP7 Projects in Rare Anaemias
    “EuroFancolen” - J. Bueren (Spain)
    Presentation (2.300kb); Abstract(10kb) “CoMMiTMenT” -L. Kaestner (Germany)
    Presentation (3.310kb); Abstract(8kb) “DEEP” - A. Ceci (Italy)

FINAL REMARKS


  • UNITED - Marco Bianchi (Italy)
  • UNITED - Loris Brunetta (Italy)
  • ENERCA - J. L Vives Corrons (Spain)

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