Transversal Working Groups

To faciliate focused activities for topical issues in rare conditions, two Transversal Working Groups have been launched in Endo-ERN:  Transition of Care and Genomic.  

•  To map current practices in Endo-ERN reference centres to faciliate transition from paediatric to adult care
• To collect and review current/ongoing activities in Endo-ERN aimed at improving transition from paediatric to adult care
• To identify best practice standard for transition of care for the rare endocrine patients 
• To promote and if necessary, create key resources to facilitate best practice in transition of care within our network member hospitals

Led by Thomas Eggermann, Institute for Human Genetics and Genome Medicine, RWTH University Aachen, Germany and Dirk Prawitt, Center for Paediatrics
and Adolescent Medicine, University Medical Center, Mainz, Germany, the initial
activities are getting started.  If you are interested in being involved please contact the Endo-ERN project office.  

The transversal working group will meet online every three months.  

 

Purpose/aims of the working group:  

• To improve guidelines, identify gaps and update where necessary
• Smooth and applicable genetic testing guidelines, which consider daily routine and the best standard for genetic testing ensuring cooperation with other societies and avoiding double work
• Suggest a standardised genetic testing regime whenever possible to guarantee a standarised testing procedure all over Europe
• To orchestrate and to channel the activities of Endo-ERN in the field of genetics, to avoid fragmentation and unhelpful developments in genetic testing

Check out the presentation from the Endo-ERN GA for an overview of planned activities.  
Find out additional information about the orgin of the group and and a continuously updated list of topics.  An update from the October Endo-ERN SC/AB meeting.