Aims of the Network

  • To ensure an early and definite making of a diagnosis in order to enable a profound clinical and genetic counselling.
  • To optimize available therapeutic approaches and to spread the knowledge about what is already known and to develop new therapeutic strategies depending on new insights (example: therapy of CHILD Syndrome by a targeted cream containing lovostatin and cholesterol).
  • To help with coping and to improve patient empowerment (cooperation with patient organization Selbsthilfe Ichthyose e.V.).
  • To see that results from basic research find their way into every day clinical care
  • To improve knowledge transfer to lay people, affected persons, and to physicians among else by close cooperation with patient groups such as Selbsthilfe Ichthyose e.V. or ENI at the European level.
  • To promote research into disease mechanisms in order to have better therapeutic approaches in the future.