A Nordic link collection and contact service for rare diseases

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A nordic link portal

www.rarelink.org (no/se/dk/is/fi) is a Nordic website which contains a compilation of links relating to information material on rare diseases, published by organizations commissioned by the governments of Norway, Sweden, Finland, Iceland and Denmark.

In addition to direct links to the information material, you will also find links to disability organizations in the Nordic countries.

Rarelink is aimed at persons who seek information, for instance persons with a rare diagnosis, next of kin or experts who encounter or treat patients with rare diseases.

The web resource Rarelink has emerged through collaboration between Center for Små Handicapgrupper, part of The Ministry of Social Affairs (Denmark), Department for Rare Disorders in The Directorate for Health and Social Affairs (Norway) and The Swedish National Center for Rare Diseases (Sweden). These government bodies have for several years made a joint effort at knowledge dissemination regarding rare disorders. A key element of this effort has been the publication of information material on the Internet. In Norway, such material is primarily published by the various resource centers for rare disabilities, which cooperate with the directorate. The project is chiefly funded via grants from Nordic Counsel of Ministers.

NORWAY

Norwegian National Advicery Unit on Rare Disorders Website:

DENMARK

The National Board of Social Services Website: www.socialstyrelsen.dk/handicap/sjaeldnehandicap, email:

SWEDEN

Ågrenska, National resource centre for rare disorders, Box 2058, 436 02 Hovås. Website: Website: www.agrenska.se, email:

FINLAND

The Finnish Network for Rare Diseases, Harvinaiset-verkosto, Iso Roobertinkatu 20-22 A, 00120 Helsinki, Finland. Email:

or go to Website: www.harvinaiset.fi

In Norway, a disease is defined as rare when it occurs in up to 100 identified persons per million inhabitants. In Denmark, the definition is up to 200 persons per million inhabitants.

Information found on www.rarelink.eu (no/se/dk) does not supplant direct communication with a physician, but is rather intended as a supplement.

Supported by The Nordic Counsel of Ministers Nordic Counsel of Ministers