Fabry Disease Centre of Excellence
The Fabry expert team was established in 2002 and is part of the Division of Medicine at Turku University Hospital.
The Fabry expert team supervises the follow-up of all Fabry patients in Finland.
The vision of the Fabry team is to meet each patient at least once a year, either in Turku or in their local hospital. The Fabry expert team is always available for consultation.
A major role of the Fabry expert team is to educate and to up-date other health care professionals about Fabry disease. Being present at the start of a new enzyme replacement therapy is a good and common practice.
The Fabry team is responsible for data input in the international patient registries: the Fabry Registry and Fabry Outcome Survey. The Fabry registries are established to contribute and share data, gain insight and improve research of Fabry disease. Physicians can have access to the registry to follow up the data input of their patients. Participating is optional and a written consent is needed. You can always contact the Fabry team if you have questions about the registries.
Taking part in the development and updating of guidelines for both for Fabry patients and healthcare personnel is another essential role of the Fabry expert team.
Networking is important when it comes to rare diseases!
"Safety, trust, continuity and fluency"