National Co-ordinator: Stein Are Aksnes
Phone: +47 810 20050
Dir: +47 24163574
e-mail:

Address:
Norwegian Directorate of Health
Department for rehabilitation and rare disorders
P.O.Box 7000
St Olavs plass
N-0130 Oslo
NORWAY

Scientific advisory board: Dr. Gunnar Houge
Phone: +47 5597 54444
e-mail:

Address:
Haukeland University Hospital
Centre for Medical genetics and molecular medicine
Jonas Liesvei
5021 Bergen
NORWAY

Web-based information services:
Norwegian Directorate of Health
Rehabilitation and rare disorders department
E-mail:
http://www.helsedirektoratet.no/sjelden
http://www.rarelink.no


Specialised Helplines:
Norwegian Directorate of Health
Rehabilitation and rare disorders department
Free helpline: +47 800 41710