Supportive Care

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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Other working groups

Gaucher Disease Diagnostic

The group discusses technical and ethical issues associated with the diagnostic process of Gaucher disease, including biochemical and molecular diagnosis, newborn screening, IA, and other diagnostic techniques

Management and Monitoring

The group will create guidelines for the management and monitoring of GD which can be used internationally to improve experience and outcomes for Gaucher patients

Gaucher Disease Additional Morbidities

The group has first discussed extensively that we should move away from “complications’ or ‘co-morbidities’ and define the occurrence of disorders that can be related or unrelated to GD as “additional morbidities”

Laboratory

Discussing GD’s laboratory aspects, including (but not exclusively): biomarkers, biological materials, NGS technics, abnormalities other than those of the GBA gene, etc.

Ethics

Discussion of ethical questions relevant to the care of Gaucher patients throughout the world