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Fabry's 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"

Päivitetty: 20/01/2015 07:28
Luotu: 03/12/2014 14:00

 Contact information

Street address:

Tyks, T-hospital (building 18)
Acute Internal Medicine Ward 1
Main entrance 18A, 5th floor B Wing
Hämeentie 11, Turku

Physician in charge

Ilkka Kantola
ilkka.kantola@tyks.fi
02 313 0130

Fabry nurses

Susanne Walls       
susanne.walls@tyks.fi    
02 313 5012

Miia Rainto
miia.rainto@tyks.fi
02 313 1012
(ward telephone)

Postal address

Operational Division of Medicine
Acute Internal Medicine Ward 1 (TB5)
PO Box 52
20521 Turku