Opnunarávarp Guðbjarts Hannessonar velferðarráðherra á ráðstefnu um sjaldgæfa sjúkdóma

Dear guests.

It is an honour for me to welcome you to this Nordic conference on rare diseases. This year's meeting is organised by the State Diagnostic and Counselling Centre and the Ministry of Welfare in Iceland in cooperation with the Rarelink steering group. The two day program is ambitious and includes presentations on a broad range of topics by experts representing various Nordic institutions, patient organisations and research facilities. In addition, we'll have the opportunity to hear the voices of parents bringing up children with unique and rare diseases – explaining their past and present challenges and emphasising their hope for the future.

A rare disease is classified as being a condition which affects less than one in 2,000 to 5,000 individuals. These diseases are intriguing and complex, caused by various genetic and environmental factors. It is estimated that there are between 5,000 and 8,000 known rare diseases in the world and collectively they might comprise 6 to 8% of the European/Nordic population. Rare diseases not only affect those diagnosed but their families, friends, care takers and society as a whole and people with rare diseases are at risk of isolation and discrimination. Therefore, co-operation is important in order to establish broader knowledge and resources within the various disciplines such as medical, educational, psychological and social. In this respect, this conference is an important venue bringing together experts and knowledge in the various disciplines from the five Nordic countries.

Collaboration between the Nordic countries has a long tradition. Nordic societies are based on common values and “The Nordic welfare model” has become an international term. Rare diseases have been on the Nordic agenda in recent years. The Nordic Welfare Centre (NVC) financed a project on rare diseases in 2008 which brought together people working within this field from all the five Nordic countries. The project was completed in 2010 with an ambitious report documenting available services for people with rare diseases in the Nordic countries as well as delineating possible collaboration within this field. At a disclosure meeting in Copenhagen it was decided to continue this cooperation with biannual meetings. The first meeting was held at Agrenska in Sweden in September 2010 and the current conference here in Reykjavik is the second event.

Nordic collaboration on rare diseases has also been under discussion by the Nordic Council of Ministers on Health and Social Issues. In June 2010 the subject was discussed with the aim of continuing further centralisation and specialisation. The established goal is to reach an understanding on how best to meet the shared challenges through better interplay between highly specialised services on the one hand and the centralised services and the general health care one the other hand.

A committee of experts submitted a progress report last February and recommended further action in the Nordic context. Among the committee's proposals was that there should be exchange of personnel between countries so as to increase expertise and mutual quality control. They also suggested that it would be of great value to establish rules of conduct for certain groups of patients. The committee will deliver its next report in early 2013 and it is my hope that this report will serve as a guideline for further cooperation.

With over 40 speakers and more than 100 persons in attendance, today's conference will cover the Nordic approach to rare diseases. That includes the work of patient organisations, networks and websites, educational opportunities and research. The information will be presented in plenary, parallel and poster sessions during the two days.

In addition, the informal and relaxed coffee and lunch breaks, as well as tonight's dinner, will enable us to mix and get to know each other. The main goals of this conference are to delineate the specific context in which the Nordic countries may find advantages of cross-border collaboration, as well as trying to increase public and governmental awareness of issues related to rare diseases within the Nordic arena.

It is important that we recognise and celebrate the value of sharing knowledge and expertise in the Nordic context. It is through such collaboration that we can effectively and swiftly attain the goals we set ourselves. Today's conference bears witness to the enthusiasm and willingness to make this a reality. 

I would like to thank the local organisers as well as the Rarelink steering group for making this conference a reality by bringing together this large group of people interested in the welfare of people affected by rare conditions. By sharing knowledge and know-how on rare diseases we can make a difference!