Norrænt samstarf

  Félagið er í mjög góðum virkum tengslum við sjúklingasamtökin á Norðurlöndunum og sitja í nefnd í félagi sem heitir SBONN og eru samtök sjúklingasamtaka á norðurlöndunum.

 

Danmörk   http://sjaeldnediagnoser.dk/    

Noregur  https://helsenorge.no/sjeldne-diagnoser

Svíðþjóð 

Agrenska  Miðstöðin í Svíþjóð  https://www.agrenska.se/?fbclid=IwAR15YeEj4pWB4iiX3doRX3pVADsvcNDE9P5eBnvtLHnZISzIxfBqufo2KPA

UM SBONN á ENSKU

SBONN
 

During spring in 2014 the Nordic umbrella organisations for rare diseases decided to develop a closer cooperation through the establishment of Sällsynta Brukarorgisationers Nordiska Nätverk (SBONN). After that there have been 2 networking meetings every year. The last taking place February 13th 2017 in Oslo. Topics at the meeting were future collaboration, youth initiatives and transition, national plans/strategies and exchange of ideas and knowledge in between Iceland, Denmark, Sweden, Norway and Finland.