The Swedish Ichthyosis Association (Iktyosföreningen)

We organize people of all ages with any type of ichthyosis, related skin diseases and syndromes were one of the symptoms is ichthyosis. We exist all over Sweden and we are divided into 12 geographical regions. Our office is placed in Sundbyberg, just outside the city of Stockholm. Our ombudsman Helene Reuterwall work full time at the office. The board of the association consists of 8 persons and our chairman is Mikael Gånemo.

What we do:

- organize member meetings together with our members, both nation wide and in our regions.

- give support/advice to people with any form of ichthyosis, related skin diseases and syndromes.

- spread information to the Swedish health care, to schools/preschools, relevant authorities and the public about ichthyosis, related skin diseases and syndromes.

- detecting inequalities and work to improve health care, social facilities concerned and quality of life for children, adolescents and adults with ichthyosis, related skin diseases and syndromes.

- monitor national and international research on ichthyosis, related skin diseases and syndromes.

- publish a member journal, Iktyostidningen, twice a year.

- invite our members to to come together during a weekend every year in the month of May. Besides our annual meeting, we create an interesting program both for adults and children.

- cooperate with other disability organizations in common issues.

Membership fee

For the so called head member in a household, this person will pay 150 SEK/year. If there are other persons in the household who want to become members, they pay 75 SEK/each/year, regardless the age.
The Swedish Ichthyosis Association is a member organization of Rare diseases Sweden.
We are also member of a network called ENI (European Network for Ichthyosis).
Welcome to contact our office on phone 08-546 404 51 or send an e-mail to