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 leads to complete the first year deliverables.

Click on the link below to read more!

EU public consultation survey on digital single market

The EU public consultation survey on transformation health and care in the digital single market is open until the 12th of October 2017. The purpose of this consultation is to define the need and scope of policy measures that will promote digital innovation in improving people’s health, and address systemic challenges to health and care systems.

The consultation collects views on:

  • Cross-border access to and management of personal health data;
  • A joint European exploitation of resources (digital infrastructure, data capacity), to accelerate research and to advance prevention, treatment and personalised medicine;
  • Measures for widespread uptake of digital innovation, supporting citizen feedback and interaction between patients and health care providers.

Digital data sharing is of vital importance to all cross-border healthcare initiatives, such as Endo-ERN.

EUSurvey

New ePAGS

After the definite approval from Eurordis in August, Endo-ERN has added 5 new patient representatives to the team.
If you are interested in becoming a patient representative, check out our How to become an ePAG  web page!

The new ePAG representatives are:

  • Manuela-Brösamle
    Manuela Brösamle
    Manuela Brösamle
    Patient representative for the AGS-Eltern- und Patienteninitiative e.V., Secretary, Germany
  • Patricia-Carl
    Patricia Carl
    Patricia Carl
    Patient representative for the BKMF e.V. (Federal Association for People of Short Stature and their Families), Chairwoman, Germany
  • Carole-Delorme
    Carole Delorme
    Carole Delorme
    Patient representative for the “Association Surrénales” , Member, France
  • Elisabetta-Freo
    Elisabetta Freo
    Elisabetta Freo
    (Parent) Patient representative for the A Fa DOC (Association of patient’s families with deficit of growth factor and similar disorder)” Memebr of the executive board, Italy
  • Marika-Porrey
    Marika Porrey
    Marika Porrey
    Patient representative for the Schildklierkanker werkgroep (SON) / Thyroid Cancer Alliance , President, The Netherlands
  • Find all ePAGs here 

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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 HCPs part of Endo-ERN will be represented at this General Assembly.

    More details on the programme will follow later.

    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 HCPs to join existing ERNs.
     

    • A call for healthcare providers 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 not expected before 2019.

     

    Any updates regarding a future call for both ERNs and HCPs will be posted on DG Sante ERN and on the Endo-ERN website.

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    Endo-ERN is on Twitter

    Endo-ERN is now on Twitter

    The Twitter page for Endo-ERN is online.

     
    Follow the page to stay updated on news regarding ERNs, Endo-ERN, Paediatric and Adult Endocrinology, meetings and workshops, and much more.

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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, longer video reportage, brings the full story of the European Reference Networks, with the views of doctors, patients and European Commissioner Vytenis Andriukaitis.

    Watch the videos

    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. Continue reading

    Third meeting of the International Consortium for Fibrous Dysplasia – MAS

    The third meeting of the International Consortium for Fibrous Dysplasia will be held this year in Leiden, the Netherlands, from November 15th-17th 2017. Similar to the previous meetings, the main objectives of this meeting are:

    • to review and update the clinical managment of Fibrous Dysplasia/MAS
    • to encourage the interaction between basic scientists with clinicians of various specialities and patient advocacy groups.

    Continue reading

    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. Continue reading

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