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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Swedish Association of Rare Disorders


Box 1386
SE-172 27





Email Address




The Swedish Association of Rare Disorders was founded in 1998 and has about 7,000 members, representing approximately 50 rare disorders. Its main mission is to help people with rare disorders make their voices heard and improve their situation by cooperating with others. The association is involved in advocacy, promoting centers of excellence for treatment, and raising the level of awareness of specific problems encountered during daily life by individuals and families affected by rare disorders. This includes, for instance, improving the understanding of the needs of children with rare disorders in their schools.

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