In March 2024, the MPS Society organised a Fabry conference, bringing together patients, researchers, and clinicians for a weekend of connection and knowledge-sharing within the Fabry community. Insights were gathered during the event from Fabry patients and their caregivers through surveys and interactive post-it note boards, providing valuable perspectives on their experiences and needs.
The data gathered includes participant demographics, symptom management, attitudes to research and clinical trials and emotional mapping throughout a patient's Fabry journey.
