Centres of DSD Care
Recently, the EU launched a call for the establishment of European Reference Networks (ERN) for Rare Conditions.
An ERN for rare endocrine related conditions is currently organised by Olaf Hiort (Chair of DSDnet) and Alberto Pereira (University of Leiden, NL) to cover all rare hormonal conditions in eight thematic areas, DSD being one of them.
The ERN will form centres approved in their own countries as health care providers (HCPs) according to standard criteria. Approved HCPs are eligible to join an ERN. The ERN will share expertise, improve diagnosis, educate and train both health care professionals and patients, produce guidelines, develop connections to facilitate research, and disseminate the results to the patients, to centres and to public health organisations.
DSDnet will take a strong part in the determination of HCPs participating in the EndoERN. If the ERN is approved, we will have a list of approved centres dealing with DSD by spring 2017. We believe that this will be vital for improving the care of people with DSD from birth through adulthood.