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.
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 |
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