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The activity during this year concentrated on the survey "Unmet needs of MEN patients" . The questionnaire will be published in november and distributed through the EMENA member organisations, the Endo-ERN patient advocacy groups, newsletters and social media. First results will hopefully be published in march 2024.

In september we were represented in Den Haag during the ESPE conference in a booth run by a group of Endo ERN patient advocacy groups.

Due to the political situation we cancelled our ESE attendance in Istanbul in spring.


On Saturday 20th May, EMENA were delighted to host a Patient Voice Session at the #ECE2022 in Milan. EMENA Medical Advisors, Prof Gerlof Valk and Dr Carla Pieterman were introduced by AMEND CEO and EMENA Board member, Jo Grey, and went on to give a wonderful, interactive talk about 'MEN1: more than just the 3Ps'.

The talk can still be accessed by those who registered for ECE2022 online.

Our thanks go to the European Society for Endocrinology for the invitation and to Drs Pieterman and Valk for an excellent and educational session.

































In 2020 EMENA continued to prepare the publishing of the survey on Quality of Care among European MEN patients.


The paper was submitted to an ENDOCRINE supplement together with articles written by members  (physicians and patients) of the European Reference Network on rare endocrine conditions (Endo - ERN) . (www.endo-ern.eu)

Endocrine 71, 634-640 (2021)

complete article/abstract:



first page:

Endocrine suppl. 02/21Endocrine suppl. 02/21

























In 2019 we presented our EMENA survey during different meetings:

Our posters were accepted for example:

  • German Society of Endocrinology (DGE)

        in Göttingen, Germany: 20.03. - 22.03.2019


DGE 2019 CoCDGE 2019 CoC






















National Conference Rare Diseases in Berlin, Germany : 26./27.09.2019

NAKSE Berlin 2019NAKSE Berlin 2019


















  • Survey of Patient Perceptions of Quality of Care for MEN in Europe

    This survey was executed throughout 2018 among all European countries.  To date, two research posters were exhibited at the British Endocrine Society meeting in November 2018.  You can read the survey results in these posters below:

          Thanks to Jo Grey, AMEND, UK

World MEN 2016 in Utrecht, The Netherlands

The 15th International Workshop on Multiple Endocrine Neoplasia and other rare endocrine tumors “WorldMEN 2016” took place in Utrecht, the Netherlands on September 29 – October 1, 2016.


Our EMENA booth

Here is our report  about    written by Jo Grey, AMEND´s CEO and EMENA´s secretary.


Here are some impressions:

Choose your language and see for more information!