What is NIRK?

NIRK is a network that has the aim to improve the transfer and exchange of knowledge between already existing structures in Germany with regard to ichthyosis: between basic science research, applied research, clinical centers, medical doctors in private offices, hospitals and patient organization Selbsthilfe Ichthyosis e.V. Moreover, it is the idea that topics that are relevant for research find their way from clinical everyday life to the relevant researchers. Thus the general concept is to improve already existing communication structures by mutual exchange in a horizontal and vertical manner.

Historically, NIRK evolved from the German Arbeitsgemeinschaft Dermatologische Forschung (ADF) (working group for dermatologic research) and from the German Arbeitsgemeinschaft für Pädiatrische Dermatologie (APD) (working group for pediatric dermatology) and has the ambition to involve in Germany all researchers and clinicians who have an interest in ichthyosis and related keratinization disorders.

The German government (BMBF) provided a funding from 2003 to 2013. Since then NIRK has continued as a loose association. An outstanding achievement of the NRIK association was in 2009 the organization of a world-wide consensus conference that led to a new consensus classification of ichthyosis.

Even after discontinuation of the government funding the NIRK association managed to review and rewrite the official German AWMF guideline for therapy and diagnostic of ichthyosis and members of NIRK are involved in preparing a European therapeutic guideline for ichthyosis (at the moment still under construction – May 15, 2017). Several members of the NIRK association have been recognized in the meantime by the German Federal government as official reference centers and are members of the European reference network for rare skin disorders which is headed by Prof. Christine Bodemer of the Necker Hospital in Paris (see also Reference center for Ichthyoses and Palmoplantar keratosis ReCIP)