October 2019

Endo-ERN Webinar Alström 25 November at 15:00 CET

On Monday 25 November 2019 at 15:00 – 16:00 CET an Endo-ERN webinar about “Alström Syndrome” is organised. The webinar will be held by Pietro Maffei MD,PhD, Padua University Hospital, Italy and Marina Valenti, mother of a patient and member of Associazione Italiana Sindrome di Älstrom. Dr. Maffei will be talking about: Endocrine and Metabolic issues in Alström Syndrome. Furthermore, Marina will be sharing the family perspective: Coping with Social, Educational and Medical obstacles AS presents.

The Webinar is open and free to anyone interested in this topic.

Endo-ERN CPMS Survey 2019

The CPMS system has now been active for almost 2 years and at Endo-ERN, we are very keen to understand a little bit more about the use of CPMS within our own network. Of course, we already have data on activity but this survey will provide us with a better insight on its usefulness. We would be very grateful if you could complete the short Endo-ERN CPMS Survey 2019 which should not take more than 2 minutes of your time. The survey will close on Friday December 6th.

Endo-ERN General Assembly 2020


The General Assembly will take place in the Istituto Auxologico Italiano, Villa Caramora on the Lago Maggiore (Verbania), Italy. It is important that every member is represented.

Preliminary time schedule:

Tuesday, 10 March 2020

9:00 – 10:30 hrs Steering Committee & Advisory Board meeting

11.00 – 17.00 hrs GENERAL ASSEMBLY

Wednesday, 11 March 2020

9:00 – 12:00 hrs GENERAL ASSEMBLY

EuRRECa logo

Second Annual EuRRECa Project Group Meeting

Prior to the General Assembly of Endo-ERN, EuRRECa will hold their annual meeting on Monday 9 March 2020, in Verbania, Italy. The venue will be at the same location as the GA of Endo-ERN. For more information about the program and registration for this event, visit the EuRRECa website.

ECRD 2020


Endo-ERN is an associate partner of the 10th European Conference on Rare Diseases & Orphan Products, to be held in Stockholm, Sweden on 15 and 16 May 2020. The overarching theme is the rare disease patient journey in 2030. Prof. Alberto Pereira is co-theme leader for the parallel theme 3 'care for delivery' for ECRD 2020.

Deadline for poster submissions is 10 February 2020. Registration for this event will open in the second half of November.

EURORDIS-Rare Diseases Europe is also offering patient fellowships for up to 40 patients' advocates to attend this conference. These fellowships aim at empowering patient advocates by offering a platform for networking opportunities, access to information and sharing experiences. Registration for patient fellowships is open until 2 December 2019.

Endo-ERN website now available in Polish

We proudly announce that our Endo-ERN website is now available in Polish. This way, we hope to reach more patients, caretakers, medical specialists etc. closely involved in the field of rare endocrine conditions, all over Europe, all over the world. The Endo-ERN website is now available in the languages English, Bulgarian, Spanish, Hungarian, Italian, Polish, Portuguese, Romanian and Czech.

Affiliated Partners

We are very delighted to welcome 5 more Affiliated Partners. Two centers are located in Croatia, two in Slovakia & one in Cyprus. In total Endo-ERN has 16 Affiliated Partners.


A Free Globally Accessible Website For Paediatric Endocrinology

The ESPE e-learning portal is very useful for education and training of professionals. It consists of interactive learning and covers nearly all paediatric endocrinology topics, divided in chapters and cases. The ESPE e-learning is available free of charge, only registration is needed.

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