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Information leaflets
We have information flyers available in multiple languages and you can download them on our website! The flyers are available in English, French, German, and Italian.
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Update Clinical Patient Management System
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!
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Endo-ERN LinkedIn
Endo-ERN is now active on LinkedIn! Follow us and expand your network by connecting with others working with Endo-ERN.
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Endo-ERN representation in coordinators work group
Endo-ERN has expanded its participation in the EU ERN coordinator Working Groups on ‘Research’ and ‘Knowledge Generation’! The EU ERN Working Group on Research focuses on how ready ERNs are to perform clinical trials, and our own WP3 Research & Science chairs, Martine Cools and Marta Korbonits, have agreed to also represent Endo-ERN in this working group. For the EU ERN working group on Knowledge Generation our WP4 Quality of Care & Patient View chairs, Susan Webb and Anna Nordenström, will participate. The focus in this working group will be on clinical guideline development.
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Quality of Care Standard for Adrenal Disorders
Over the past three years a quality of care standard for adrenal disorders has been developed and was recently listed in the Register of the Dutch National Health Care Institute in September 2018. The standard was initiated by the consortium AdrenalNet and was developed in cooperation with both patients and healthcare professionals.
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Dissertation on Cardiovascular Risk and Steroid Metabolism in Congenital Adrenal Hyperplasia
In October 2018, Christiaan F. Mooij pubished a dissertation on Cardiovascular Risk and Steroid Metabolism in Congenital Adrenal Hyperplasia (CAH).
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4th Conference on European Reference Networks
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.
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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.
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