[ENI] Norsk Keratoseforening [Norway]

Iktyoseforeningen I Norge

The Ichthyosis Organization in Norway (Norsk Keratoseforening) was founded in 1995 by some parents who had children with Ichthyosis. In 2009 we changed our name to Iktyoseforeningen I Norge. Today we are ca 126 members, both persons in different ages with the diagnosis and their relatives. It is a self-help association which was set up to help individuals and families affected by ichthyosis.

Our aim is to bring people into direct contact to enable the flow of information in between. Therefore we organise an annual meeting. We help to exchange addresses of persons in similar circumstances and of physicians who are specialized in ichthyosis.

In addition our patient association is member of ENI, the European network for ichthyosis.

A selection of what we do:

*arrange meetings and events for member and their families

*publish a membership newsletter 3-4 times a year were we cover news from research on Ichthyosis.

*participate in medical seminars and congresses with information/brochures and exhibition

*influence authorities, labour market, schools, kinder gardens among others to improve treatment of persons with Ichthyosis and to increase the competence of personnel working with persons with the disease and their relatives

The Ichthyosis/family weekend 2009 took place in April in Jurmala (Riga), Latvia. In 2010 we will have our family weekend in Hamar, a small town north of Oslo.

On our hompage you can find futher information and a more detailed portrait of our association. You are welcome to visit our homepage:

Norwegian Ichthyosis Association