Endo-ERN Newsletter September 2018 ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏
 
Newsletter September 2018
 
espe-meeting
 

ESPE2018

Endo-ERN was present at the European Society of Paediatric Endocrinology Meeting 2018, in Athens, Greece. For the whole duration of the meeting we had a stand together with EuRRECa and there was a special Endo-ERN symposium.

 

 
 
 
 
 

Update Clinical Patient Management System

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In the past few months the number of users of the Clinical Patient Management System (CPMS) has increased greatly and several patients have already been discussed within the system. Every member is encouraged to use the system to enrol patients, discuss patient panels, and schedule meetings within the system. If you need any help, don't hesitate to contact us!

 

 
 
 
 
 

Operational Helpdesk

  endo-virtual-consultation

The Endo-ERN CPMS Operational Helpdesk has become functional! An adult clinician (Danielle Steenvoorden) has been employed in the LUMC, Leiden, and a paediatric clinician (Julia Hoppmann) has been employed in UKSH, Lubeck. They will help make the CPMS and CP (Collaborative Platform) functional and as efficient as possible.

 
 
 
 
 

Successful audit

Seven Endo-ERN Reference Centers were assessed during the audit last month and all seven passed! The audit consisted of seven documentation assessments and one on-site visit.

 

 
 
 
 
 

6th International Summer School on Rare Disease and Orphan Drug Registries

  6th International Summer School on Rare Disease and Orphan Drug Registries

The 6th International Summer School on Rare Disease and Orphan Drug Registries took place from September 10 to September 14, 2018, in Rome, Italy. The course was addressed to professionals and patients involved in, or planning, the establishment of a rare disease registry, particularly within the European Reference Networks (ERNs).

 

 
 
 
 
 

4th Conference on European Reference Networks

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On November 21 and 22 the 4th Conference on European Reference Networks will take place in Brussels, Belgium. 10-12 participants per network are invited to attend and Endo-ERN will be present with adult and paediatric endocrinologists, as well as patient representatives.

 

 
 
 
 
 

Endo-ERN General Assembly 2019

Don't forget to register for the Endo-ERN General Assembly on March 12, 2019, if you have not done so yet! It is important that every HCP is represented, however, only 1 representative per HCP can attend. Exemptions to this rule may apply to those that also fulfil a role in the Steering Committee or in the Advisory Board.

 

To book a room in the hotel, please find the reservation link in your invitation. More information on the programme will be announced later.

 

 
 
 
 
 

Upcoming events