Norio - Centre of Rare Diseases

Norio - Centre of Rare Diseases 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 Inclusion Finland, KVTL. It is located in Pitäjänmäki, Helsinki.  

Norio Centre’s services

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. We 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 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.

In 2019 we arrange also rehabilitation courses for youth and their families with rare disease and courses for cleft lip/palate families.

Our services are funded by the Funding Centre for Social Welfare and Health Organisations (STEA).

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. Norio Centre is also associate member of the EURORDIS.

Contact information

Norio - Centre of Rare Diseases
Kornetintie 8, 00380 Helsinki

+358 44 5765 439

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.]