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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.
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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.
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.
Give support/advice to people with any form of ichthyosis, related skin diseases and syndromes.
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Monitor national and international research on ichthyosis, related skin diseases and syndromes.
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Cooperate with other disability organizations in common issues.
Spread information to the Swedish health care, to schools/preschools, relevant authorities and the public about ichthyosis, related skin diseases and syndromes.
Publish a member journal, Iktyostidningen, twice a year.