Nordic conference on rare diseases
May 31 and june 1, 2012
Reykjavik, Iceland
Information about more then 600 Rare
Diseases in Nordic languages
Going to talk about:
• Short background
• What is rarelink?
• Why successful?
• Need for rarelink in the future?
Background, identified similar needs in Nordic
countries:
• Difficult to find qualified facts and information
• Lack of knowledge among professionals
• Problem to get treatment, social and
everyday support
• Problem for the parents to ”get in control”
Background, natural with Nordic cooperation:
• Definition of a rare disease similar in nordic
countries
• The view on wellfare, social security and
democracy
• Cultural similarities
• Language similarities
Target groups rarelink
?
?
Psykiatrin
Immunologin
Arbetsterapin
Neurologin
Medicin
Habiliteringen
Logopedin
Kardiologin
Ögon, Näs
och Hals
Lekterapin
Geriatriken
Syn
Ortopedin
Kirurgin
Hörselvården
Urologin
Genetiken
Onkologin
Sjukgymnastiken
Lungmottagning
Psykologin
Reumatologin
Odontologin
BB
Endokrinologi
BVC
Psykiatrin
Immunologin
Arbetsterapin
Neurologin
Medicin
Habiliteringen
Logopedin
Kardiologin
Ögon, Näs
och Hals
Lekterapin
Geriatriken
Syn
Ortopedin
Kirurgin
Hörselvården
Urologin
Genetiken
Onkologin
Sjukgymnastiken
Lungmottagning
Psykologin
Reumatologin
Odontologin
BB
Endokrinologi
BVC
In order to give a person a correct diagnose,
treatment and other relevant support, it is essential
for professionals to have fast access to qualified
information.
Aim  target groups rarelink
!
!
Phase I 2003 – 2006
Phase II 2006 – 2009
Nordic Council of Ministers and each of the
participating organisations contribute to the
development of rarelink.
2012 rarelink have past phase II and are pre
phase III = new project period
Phase III 2013 – 2016?
What is rarelink today?
Acting together in rarelink
Cooperation and development
• Different content from each country and in
different phases.
Entrance /
start page in
each language
Diagnose
information
different from
country to
country
Success factors
•
•
•
•
•
•
Developed from a need
Engagement – from the participants
Concentrated mission statement
”Keep it simple”
Large specific competence within all participants
No prestige – working climate is focusing on
solving the tasks
• Every country one vote in the leading group
• An agreement about criterias for rarelink
• Exchange of knowledge - winwin
Organization
Diagnosis group
Leading group Norge
Danmark Finland Sverige
Island
Marketing group
Tecnical support group
Organization, last year all contributing
to the conference planning
Diagnosis group
Leading group Norge
Danmark Finland Sverige
Island
Marketing group
Tecnical support group
Status – rarelink – May 2012
• 2012 large nordic rare conference.
• 115 000 page views – increasing.
• Norwegian–, Swedish–, Finnish–, Danish–,
English– and Icelandic languages in rarelink.
• About 600 publicated diagnosis
• The number of links and documentations
increase all the time.
• Take out the ”get in touch”
Development of rarelink
• Continue to work within the mission – clear
and simple.
• We are not going to invent the wheels that
already exists.
Development of rarelink
!
!
Development of rarelink
!
!
• Developing an “app”
Possible next steps to
improve the access to
information and
increase knowledge.
rarelink
• Participating in making
conferences
We are proud that all Nordic flags are represented in
rarelink
Good working
climate – a lot of
work but fun!
