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: