The Swedish National Center for Rett syndrome & related disorders
The center is the specialist healthcare center, originally only for Rett syndrome, and now also for related disorders. Families with patients from foreign countries are very welcome to the center. Special arrangements have to be made for these visitors.
The center, situated in Frösön Östersund, started in 1995 as a specialist healthcare center for Rett syndrome. Since January 2017, the center is also open for patients with related disorders, such as:
- Angelman syndrome
- CDKL5 syndrome
- FOXG1 syndrome
- MECP2 syndrome
- Mowat Wilson syndrome
- Phelan McDermid syndrome
- Pitt Hopkins syndrome
For further information, please contact the center :
The Swedish NATIONAL CENTER for Rett syndrome & related disorders
PO Box 601
SE-832 23 Frösön
Eva Hamner, Secretary
Telephone: +46 63 15 48 10
Fax: +46 63 15 45 00
Referral for patients originating from abroad
Families with patients from foreign countries are very welcome to the Swedish National Center for Rett syndrome & related disorders to take part in the centers transdisciplinary assessments. Special arrangements have to be made for these visitors.
In order to come to the National Center it is necessary to pre-arrange payment. Patients from EU countries should use the form S2 (previously E112).
The languages used at the center are Swedish and English. An interpreter can be arranged at extra cost for those who do not understand English. The medical report can be written in English (in addition to Swedish) and the translation to a different language can be made at extra cost.
Information for patients outside the EU
A Visa (for medical treatment) is often required for patients coming from outside the EU, and pre-payment has to be made before a Visa is issued. A medical certificate (including a price quote) must be written from the National Center showing when you will receive your assessment and what it includes. A statement has to be shown that you have deposited money for the planned treatment.
Conditions in general can be found at the following links: