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Fabry Focus group

Updated: Sep 19

We need your help to improve decisions about treatment and care for all Fabry patients. Join our focus group and help to shape guidance for healthcare professionals.

Have your say

Are you free on 28th September? Your expertise is needed. Share your experience at our online Fabry Focus group and you will receive a £250 gift card as a token of appreciation!

We are designing a guide to help people with Fabry and their doctors work together to make decisions about their treatment and care and we need your help.

Recent research has shown that there can be a disconnect between what healthcare professionals and patients with Fabry feel is most important when considering care and treatment options. We want your guidance to develop the best possible guide, so we are running a virtual focus group where you and others living with Fabry from across the UK can share your experiences.

The meeting will take place via Zoom on Thursday the 28th September (2.00pm–5.00 pm) and will last approximately 3 hours.

Please note that the study will involve only one focus group and then two rounds of review of the resource once it has been developed.

You can sign up by emailing RDRP at

The project is open to those over 18 with a confirmed diagnosis of Fabry. Please note that we are only looking for 8 people with Fabry to take part and we will be looking for people from a range of areas across the UK, who are on various different treatments. Unfortunately, this means that not everyone interested will be able to participate in the project.


For more information about Fabry disease please click here.


Fabry Matters Conference 2024

1 Mar, 15:00 – 3 Mar 2024, 12:00

Join us in this ground-breaking approach to Fabry collaboration for the benefit of our community.

See the full event details for more information and registration.

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