EuRRECa was present at the Rare Disease Registries Projects kick-off meeting in Luxembourg on 17th April.
Rare Disease Registries Kick-off
Video: Getting started with CPMS
The European Commission has released a video on how to get started with the Clinical Patient Management System (CPMS).
A good example of multidisciplinary expert care bridging Endo-ERN with BOND
Fibrous dysplasia of bone: a good example of multidisciplinary expert care bridging Endo-ERN with BOND.
Newsletter March 2018
Read the Endo-ERN March newsletter now! This edition contains an EU press release on Rare Diseases day and the 1 year anniversary of ERNs, announcement of an Endo-ERN and EuRRECa stand at ECE2018, Poster presentation at ECRD and much more!
European Conference on Rare Diseases and Orphan products patient poster session
Endo-ERN will present a poster at the European Conference on Rare Diseases and Orphan products. The poster will be presented by our European Patient Advocacy Group patient representatives Johan de Graaf, Petra Brügmann, and Diana Vitali.
Endo-ERN Stand and ERN Symposium at ECE2018
Endo-ERN will be actively present at ECE2018! On Tuesday the 22nd of May a special Endo-ERN Symposium will take place from 9:45 until 10:45 and you will be able to find us at our own exhibition stand, together with EuRRECa (The European Registry for Rare Endocrine Conditions), for the whole duration of the congress.
Press release: Rare Diseases day and 1 year anniversary of ERNs
The European Commission has released a press release looking back on Rare Diseases day and celebrating the 1-year anniversary of ERNs
CPMS Webinar Schedule April 2018
The CPMS webinar schedule for April 2018. We encourage all Endo-ERN members to participate.
Steering Committee & Advisory Board Meeting
The next Endo-ERN steering committee & advisory board meeting will take place on the 20th of May, 2018 from 13:00 – 15:30 at the ECE2018 in Barcelona, Spain.
Newsletter February 2018
Read the Endo-ERN February newsletter now! This past month we held our second General Assembly, the ERN coordinators wrote a position statement on the state of the UK in ERNs, and we recieved information on a new audit coming from the European Commission. Read the complete newsletter to find out more.
