Criteria for membership:
The members of the organisation are patients with the disease or their close relatives. Interested professionals may also be associated members. The board of our organisation has the authority to decide if the criteria for membership are fulfilled. Membership is free.


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Please tell us if you wish that your name, age, e-mail and phone can be given to other members. Other details will be kept confidential.
You are not alone! Your membership will give you the possibility to make contact with others with the disease. We also have a closed Facebook group for Iceland:
We do not know how many patients we are. Through your membership you will help us to strengthen our organisation and increase understanding about the condition and fight for a better treatment and care.