Training

6th European Symposium on Rare Anaemias

1st Dutch-Belgian Meeting for Patients and Health Professionals

2015 November 21-22

Amsterdam (The Netherlands)

ENERCA, led by UMCU, ERASME and CLINIC, with the support of the Multi-ethnic organisation for patients with Sickle Cell and Thalassemia (OSCAR), Belgic Association of Thalassaemia (ASBL), Aplastic Anaemia and Paroxysmal Nocturnal Hemoglobinuria (PNH) - rare blood disease community (HematosLife), Pyruvate Kinase Defficiency (PKD) Support Group, and Thalassaemia International Federation (TIF) organized the 6th European Symposium on Rare Anaemias and 1st Dutch-Belgian Meeting for Patients and Health Professionals.

This year, transversal topics centered on common medical problems of patients with sickle cell, thalassaemia and other forms of haemolytic anaemia was one of the key points of the symposium. These plenary sessions dealt with multiple converging lectures as well as with the state of the art therapy treatments and innovations in the field.
 

The second undeniable cornerstone for this symposium was the special focus on the very rare anaemias, dealing intensively with PKD and PNH prevention, diagnosis, treatment and management.

 

Symposium Presentations

WELCOME SESSION

  • Joan Lluis Vives-Corrons (Spain), European Network for Rare and Congental Anaemias (ENERCA)
    European Network for Rare and Congenital Anaemias
    Presentation
  • Paul Boom (The Netherlands)
    Dutch National Platform for Rare Diseases
  • Elfriede Swinnen (Belgium)
    Belgian Platform for Rare Diseases (Belgian Authority for rare disease plan)
    Presentation
  • Jaroslaw Waligora (Luxembourg)
    European Commission - Rare Diseases
    Presentation

Session I. Common medical problems of patients with sickle cell, thalassaemia and other forms of haemolytic anaemia- I


Chairperson: Eduard van Beers (The Netherlands)

Session II. Pyruvate kinase deficiency (PKD)


Chairperson: Richard van Wijk (The Netherlands)

Session III. Common medical problems of patients with sickle cell, thalassaemia and other forms of haemolytic anaemia- II


Chairperson: Bart Biemond (The Netherlands)

  • Vincenzo de Sanctis (Italy)
    Hormone related problems (Endocrinopathies and osteoporosis)
    Presentation; Abstract 
  • Eduard van Beers (The Netherlands)
    Dyspnea
    Presentation; Abstract 
  • Swee Lay Thein (U.S.A)
    Renal complications in sickle cell disease
    Abstract

Session IV. Common medical problems of patients with sickle cell, thalassaemia and other forms of haemolytic anaemia- III

Chairperson: Béatrice Gulbis (Belgium)

  • Marjon Cnossen (The Netherlands)
    Transition from paediatrics to adulthood: Challenging but rewarding
    Presentation; Abstract
  • José Carlos Segovia (Spain)
    Gene therapies in rare anemias
    Presentation; Abstract
  • Patricia Aguilar-Martínez (France)
    Genetic tests for rare anaemias in the area of internet and of NGS (next generation sequencing)
    Presentation; Abstract
  • Michael Angastiniotis (Cyprus)
    Developing a European registry for Rare Anaemias
    Presentation; Abstract

Session V. Paroxysmal Nocturnal Hemoglobinuria (PNH)

Chairperson: Rosario Notaro 

  • Sacha Zeerleder (The Netherlands)
    Complement activation in hematological diseases. How innate immunity induces red blood cell destruction
    Presentation; Abstract
  • Rosario Notaro (Italy)
    Paroxysmal Nocturnal Hemoglobinuria (PNH) Introduction to PNH
    Presentation; Abstract
  • Marije Bartels (The Netherlands)
    PNH in childhood
    Presentation; Abstract
  • Nicole Van de Kar (The Netherlands)
    New treatment options for the atypical hemolytic uremic syndrome
    Abstract

Hermann Heimpel honorary lecture 
 

  • Achille Iolascon (Italy)
    Congenital Dyserythropoietic Anemias: where we are
    Presentation

Session VI. Comprehensive care for patients with sickle cell, thalassaemia and other forms of haemolytic anaemia


Chairperson: Patricia Aguilar-Martínez (France)

  • Maaike Metselaar-Eijgenraam (The Netherlands)
    Psychosocial effects of rare anaemias
    Presentation; Abstract
  • Malou Ngalula Mujinga (Belgium)
    Role of nurses in treating patients with rare anaemias
    Presentation; Abstract
  • Béatrice Gulbis (Belgium)
    Telemedicine and tele-expertise for rare anaemias
    Presentation; Abstract
  • Pilar Nicolás (Spain)
    Research and clinical trials, what are the rights of patients?
    Presentation; Abstract

FINAL REMARKS 

  • Joan Lluis Vives Corrons (Spain), European Network for Rare and Congental Anaemias (ENERCA) 

 

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Co-funded by the Health Programme of the European Union.