The overall work in the Iktyosis association has from the start been concentrated on spreading knowledge and information about Iktyosis and our organization. In this connection we have contacted the hospitals specialising in skin diseases and general practitioners of Dermatology all over Denmark to hand out our information brochures about Iktyosis in general and some of the ways to care for it.
Along with this work, we are also focusing on the importance of arranging social meetings in order to let the members get to know each other and share caring tips and good advice about living with the disease and nursing the skin. Usually we have 3-4 get-togethers a year including our annual general meeting in March.
Simultaneously the foundation has been approached by day cares, and we have arranged for persons with Iktyosis to meet with families with a newborn baby with congenital Iktyosis to give them guidance and support. Also we have been visiting an asylum centre with a youngster with severe Iktyosis and we participate in both national and international conferences concerning Iktyosis and Dermatology.
The associated dermatologists, Dr. Brandrup and Dr. Bygum, have in 2006-2007 attended a scientific research together with Department of Dermatology Uppsala University Hospital, Sweden. This study has resulted in Danish patients participating in a research surveying the genetic mutation and incidents of the different kinds of Iktyosis in Denmark. A total of 350 patients from Sweden, Norway and now Denmark have been examined and their type of Iktyosis has been or is in progress of being determined during this year.
Visions and goals for the Danish Iktyosis association
- The primary objective of the self-help association is to make relations where patients and their families can find helpful advice and share their feelings regarding Iktyosis, how to care for it and how it affects their lives.
- To pass along knowledge and information about Iktyosis and the special nursing needs and issues the condition induces ex. children in day care centres and schools.
- To communicate knowledge about the latest research and treatments.
- To provide support and advice to parents with a newborn child with congenital Iktyosis.
- To arrange get-togethers for patients and their relatives.
- To support research within Iktyosis.