Supportive Care

scientific-meetings

Introduction and Objectives

The supportive care working group works on projects related to patient care that do not fall under the category of the other working groups. The aim is to develop patient-centric guidelines.

Projects

  • Supportive and symptomatic care, focusing on adults, children, and women-related issues for type 1 and neuronopathic GD
  • The transition of care from childhood to adulthood and care coordination
  • Patients reported measurement outcomes (PROMs)
  • Self-management
  • Home therapy

Members

Magy Abdelwahab – Egypt (leading the nGD subgroup)
Vesna Aleksovska – IGA
Nadia Belmatoug – France (leading the nGD subgroup)
Francesca Carubbi – Italy
Daniela Castillo-García – Mexico
Tanya Collin-Histed – IGA
Paul Guijt – IGA (leading the home therapy subgroup)
Beata Kieć-Wilk – Poland
Uma Ramaswami – United Kingdom
Shoshana Revel- Vilk (Chair) – Israel
Christine Serratrice – Switzerland
Karolina M Stepien – United Kingdom (leading the care coordination/transition subgroup)
Irena Znidar – IGA

Updates

The EWGDD Gaucher supportive care working group have been working on four related topics; the first is supportive and symptomatic care, focusing on adults, children, and women-related issues, the second is the transition of care from childhood to adulthood and care coordination, the third is patients reported measurement outcomes (PROMs), and the fourth is self-management. Each subgroup is working on writing a guidelines document using a template recently adopted by the board

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