Rarelink – the history

The history of the Rarelink cooperation

Establishing a common platform for sharing descriptions on rare diagnosis

In 2001/2002 stakeholders from Denmark, Norway and Sweden began to discuss the possibility of sharing descriptions on rare diagnosis as the amount of information available in the field of rare diseases was scarce. The three countries agreed that having quite similar languages and welfare systems made it obvious to take advantage of the possibility of sharing information and knowledge.

The Danish Stakeholder; Center for Små Handicapgrupper, who at that time were responsible for gathering and developing knowledge in Denmark, sent in an application to the Nordic Council of Ministers and received 400.000 DKK to start up the cooperation on two different issues: 1) a Nordic contact point for people with rare diseases and 2) an index for sharing diagnose descriptions.

Phase 1: The website Rarelink 2003-2006

As a result the website Rarelink was established in 2004 in a cooperation between Denmark, Norway and Sweden. It was a clear goal of the project group to make the access to information as simple as possible and not create something big and complicated needing a lot of maintenance. Therefore it was decided that the website Rarelink should link to the Norwegian, the Swedish and the Danish descriptions and give access to the existing contact point the Danish “Kontaktordningen”. In this way it was secured that the original information was maintained in each country.

Phase 2: The website Rarelink 2006-2009

In 2006 the Rarelink group applied the Nordic Council of Ministers (NCM) to support the extension of the Rarelink network to cover also Finland. NCM gave a sum of 250.000 DKK to the extension and further development of the Rarelink cooperation. In 2009 Iceland also became part of the network.

Phase 3 – till now

In 2010 The Nordic Welfare Centre initiated a mapping in the field of rare diseases in order to identify important areas for future Nordic cooperation. The mapping resulted in a report called “’Sällsynt samverkan för nordisk välfärd’ (Rare cooperation for Nordic Welfare), by Aaalto & Stankovic fra 2010. The report pointed out different important areas of further cooperation, one of them being sharing information through conferences and seminars, another being advocacy, cooperation on developing policies in the field, a third idea around common Nordic education in the field of rare diseases.

The first Nordic Conference on Rare Diseases (NCRD) was held in Sweden. At the conference it was pointed out that the Nordic Council didn’t take any further steps to work on the recommendations. The stakeholders at the conference supported the suggestion from The Nordic Welfare Centre, Rarelink to arrange conferences according to the recommendations in the report from the Nordic Welfare Centre.  Therefore the people in and around the Rarelink network decided to adopt two of the recommendations from the report. Rarelink decided to take care of arranging multidisciplinary conferences every second year, and started out by inviting all stakeholders to the 2nd NCRD in Iceland in 2012.

The third conference was held in Helsinki in 2014 with 150 participants from all Nordic countries.
fourth conference was held in Copenhagen 2016.

The planning of the conferences has been conducted in close cooperation, with a Rarelink organising committee a local organising committee and a scientific council. During the programme there has been plenary parts and parallel sessions with different topics. The abstracts have been important for choosing subjects as an input to the programme. 

The conferences have been very appreciated among the participants. In the evaluation after the conference in Finland 96% pointed out that they want to attend a similar conference again. About 90% found the conference to meet the expectations excellent, very well or well.  As a conclusion, there is a high demand to continue with the Nordic conferences.