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.
| Shoshana Revel-Vilk (Chair) – | Physician, Israel |
| Magy Abdelwahab – | Physician, Egypt (leading the nGD subgroup) |
| Karolina M Stepien – | Physician, United Kingdom (leading the care coordination /transition subgroup) |
| Vesna Aleksovska – | IGA, North Macedonia (leading the self-management subgroup) |
| Francesca Carubbi – | Physician, Italy (leading in the supportive care guidelines for adults with type 1 subgroup) |
| Daniela Castillo-García – | Physician, Mexico |
| Tanya Collin-Histed – | IGA, United Kingdom |
| Michaela Dan – | IGA, France |
| Kristiyan Dimitrov – | IGA, Bulgaria (leading the home therapy subgroup) |
| Sara Khan – | IGA, UK (member in the self-management subgroup/nGD) |
| Beata Kieć-Wilk – | Physician, Poland |
| Yann Nadjar – | Physician, France |
| Yann Nguyen – | Physician, France (leading the care for irreversible manifestations subgroup) |
| Uma Ramaswami – | Physician, United Kingdom |
| Christine Serratrice – | Physician, Switzerland (leading the supportive care guidelines for women issues) |
| Sintia Tamele – | IGA, Mozambique (member in the self-management subgroup) |
| Carolina Toneloto – | IGA, Brazil (member in the self-management subgroup) |
| Fernanda Torqarti – | IGA, Italy |
| Irena Znidar – | IGA, Slovenia |
The IWGGD Supportive Care Working Group is committed to improving the lives of patients with GD by developing and publishing patient-centric guidelines.
We use the internationally recognized GRADE (Grading of Recommendations Assessment, Development, and Evaluation) approach to assess the certainty of evidence and formulate high-quality, actionable recommendations.
Current Projects
Our team is actively working on several important initiatives, including:
🧠 Guidelines for assessing and managing neurological and non-neurological manifestations specific to neuronopathic Gaucher disease (nGD)
🏠 Updated Guidelines for Home Enzyme Replacement Therapy
🌍 Guidance for self-management, reflecting the diversity of care practices across different regions of the world
📱 Development of the Gaucher App to support education and self-management
📋 Pre-GD Clinic Questionnaire to support clinical assessments
💡 Guidelines for the care of irreversible manifestations of Gaucher disease
Get Involved:
We warmly invite all those interested to join our Working Group and contribute to one or more of our active subgroups.
📧 For more information or to get involved, please contact: srevelvilk@gmail.com
