Newsletter August 2017

The Endo-ERN August 2017 newsletter covering the activities of Endo-ERN for the past months is now available!

After only 5 months of being operational the European Reference Network on rare Endocrine conditions (Endo-ERN) has made a lot of progress. These months have been directed at deciding a specific strategy for active recruitment of engaged members. This was initiated at the first General Assembly in March 2017 by the sign up lists of interested members in work packages and this has continued since then. The Main Thematic Group (MTG) chairs and the Work Package (WP) chairs have steered the identification of [...]

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General Assembly 2018

The second Endo-ERN general assembly will be held in Lübeck, Germany on Thursday the 22nd of February, 2018!

Last year the LUMC in Leiden hosted the general assembly. This year Universitätsklinikum Schleswig-Holstein in Lübeck, will be the host. All 71 RCs part of Endo-ERN will be represented at this General Assembly.

More details on the programme will follow later.

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Future call

The first ERNs were launched in March 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 Member States. The 24 established networks are now developing their joint activities on rare and complex diseases. Once this structure has been put into place the opportunity is expected to arise to create more ERNs and for RCs to join existing ERNs.
 

A call for Reference Centers to join existing networks is expected to be opened in the first semester of 2018. A call for new ERNs should be launched in the incoming years, but it is [...]

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Video reportages European Reference Networks

After a successful launch of the European Reference Networks earlier this year, the 24 established networks are now developing their joint activities on rare and complex diseases. The added value for patients and their families will become visible in the coming months.

To illustrate the potential of the ERNs the European Commission has produced four video reportages, with real-life case studies: of an Italian patient with bone disorders, a Dutch heart patient, a Spanish girl who underwent a transplantation and a French representative of kidney patients. Telling their personal stories, we can show different aspects of the ERNs. A fifth, [...]

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ENEA workshop on ‘Hyperprolactinemia and other endocrine causes of infertility’

The ENEA workshop on ‘Hyperprolactinemia and other endocrine causes of infertility’ will take place on September 7–9, 2017 in Saint Petersburg. The workshop invites experts from all over the world to present the latest updates on the epidemiology, genetics, treatment and management of comorbidities in an interactive environment.

The ENEA is offering to all ENEA members 15 travel grants worth EUR 750 each. In addition the abstracts submitted by young endocrinologists & researchers will be evaluated by the ENEA Young Investigator Committee and the best will be invited as speakers to present their work in Saint Petersburg.

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Endo-ERN Steering Committee & Advisory Board meeting

On the 9th of October the Endo-ERN Steering Committee and Advisory Board meeting will be held in Leiden, The Netherlands. It will be the third official meeting between the Steering Committee and the Advisory Board and it will function to discuss the past and ongoing activities of Endo-ERN, and to plan the activities of the upcoming months.

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Ombudsman announces Award for Good Administration winners

The European Ombudsman, Emily O’Reilly, celebrated the range and quality of the nominations for the Award for Good Administration in a ceremony in Brussels on Thursday.

Launched in October, the Award attracted 90 nominated projects from the main EU institutions as well as many agencies and other bodies.

Prizes were awarded in 7 categories with the overall Award for Good Administration 2017 going to the Commission’s DG Health whose nominated unit developed EU collaboration in the sharing of vital information and expertise to help millions of Europeans suffering from rare diseases.

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