You can reach us by email at: or use the contact form below.

You can also reach us on Facebook:

We regularly hold online meetings. If you are interested, contact us and we will inform you about the next date and you will receive an access link.

Are you a carrier of a controversial mutation (D313Y, A143T or similar) and are receiving therapy (enzyme replacement or chaperone therapy)?

To show how successful treatment is, we collect reports of health improvements with therapy.

You are also welcome to contact us and send us your medical history or reports on the improvements you have experienced with the therapy. If requested, these can be published anonymously.

    Or you contact Morbus Fabry Selbsthilfegruppe e.V