We know that living with and managing Fabry can be difficult and sometimes it is not always easy to talk to your Fabry specialist about things you need help with. We spoke to people living with Fabry and Fabry specialists to help us develop this toolkit which focuses on the symptoms that people have told us impact them the most.
This toolkit has been funded by Chiesi Limited and developed in collaboration with Rare Disease Research Partners.
With this toolkit, you can:Â Â
Be more prepared for appointments with your specialist. Â
Feel more confident talking about your health concerns. Â
Help your specialist to understand how Fabry is affecting you. Â
Find out more about your condition and care using the questions included in the toolkit. Â
Be more involved in decisions about your care if you would like to be.Â
How to use it
This supporting document will provide you with more information about how the toolkit was developed, how it can help you and how to use it.
Please do have conversations with your specialist team and let them know your opinions on your care. Your clinicians are eager to have decisions shared with you and to create care plans that work best for you.
Fabry specialist working in a UK Specialist CentreÂ
Tell us what you think
We’d really like your feedback on the toolkit as this will help us to improve it and make sure that it is useful. If you are happy to be contacted in January 2025 with a short survey, register below. Thank you in advance!
Download
Download the printable Living Well with Fabry toolkit below and bring it to your next appointment or use this editable version to fill out and save on your device.
