AJANKOHTAISTA TILAA UUTISKIRJE LAHJOITA OTA YHTEYTTÄ

The Norio Centre

Norio Centre provides nationwide services for children and adolescents with rare and genetic disorders, as well as their families and the professionals working with them. The centre has received its name from Professor Reijo Norio, who established Finland’s first clinical genetics unit. Norio Centre is hosted by the Rinnekoti Foundation. It is located in Pitäjänmäki, Helsinki.  

Norio Centre’s services

Norio Centre arranges rehabilitation courses for families with rare, often hereditary diseases which may cause developmental disability. 

Our peer support services consist of family support, but also support for siblings and grandparents. We also arrange peer support meetings.  

Norio Centre’s special family work supports families where a child has a progressive, fatal disease with early death, like INCL or PEHO.      

Our information services are dedicated to the public and serve guidance to all our client groups. We have a free, supportive rare disease helpline, which is accessible by telephone or email. There is anonymous online genetic disease question and answer forum on our website. We also produce disease fact sheets in Finnish on rare diseases, and arrange seminars, information sessions and meetings around rare disease matters.

Norio Centre also compiles data from Finland for Orphanet, a portal for rare diseases and orphan drugs.

Our services are funded by the Funding Centre for Social Welfare and Health Organisations (STEA) and Social Insurance Institution of Finland (Kela).

Networks

Norio Centre is involved with the ITHACA, (the European Reference Network on Rare Congenital Malformations and Rare Intellectual Disability) through co-operation with Helsinki University Clinical Genetics Unit.    

The centre is a member of the Finnish Network for Rare Diseases, which consists of 20 independent, non-governmental organisations that work for the interests of rare disease patients.

Staff and contact information

Norio Centre’s multiprofessional staff includes, among others, therapists, nurses, experts in social services, a psychologist, and an information specialist.     

Rinnekoti Foundation, Norio Centre
Kornetintie 8, 00380 Helsinki
norio-keskus@rinnekoti.fi
+358 20 6385533

Publications

Sanna Kalmari, Ulla Parisaari, Ilona Partanen: The Recipe for a Person, - knowledge for children of human heredity.
Elina Rantanen  ”Jotta arkielämä ja sairaus saataisiin paremmin yhteen” - Julkisen ja kolmannen sektorin yhteistyö harvinaisissa sairauksissa. [” To better combine disease and everyday life”- A study of cooperation between public sector and rare disease organizations.]