Managing Fabry disease can be challenging, and initiating conversations with your specialist about your needs is not always straightforward. To help, the ‘Living well with Fabry: a shared decision-making toolkit’ has been developed, informed by insights from individuals living with Fabry and Fabry specialists. This toolkit was funded by Chiesi Limited and developed in collaboration with Rare Disease Research Partners.
This toolkit aims to:
- Enhance your preparedness for medical appointments
- Boost your confidence in discussing health concerns
- Increase your specialist’s awareness of Fabry’s impact on your life
- Provide questions to deepen your knowledge of the condition and care options
- Encourage active participation in care decisions
You can download the toolkit here, an editable version here and the supporting document here. The supporting document offers detailed guidance on using the toolkit.