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EMENA

The European MEN Alliance (EMENA) is an umbrella organisation formed in 2013 at a meeting in Munich, Germany.  The Alliance consists of equal representation from European patient groups who provide information and support services to patients with multiple endocrine neoplasia (MEN types 1, 2, 3 and 4) and from the expert multidisciplinary medical professionals who care for them.

On Monday 30th May, 2016, EMENA was formally established as a German non-profit organisation at a meeting in Munich 

In the General Assembly which took place on 30.09.2016 during the WorldMEN 2016 in Utrecht the following Executive Committee roles were agreed:

  • Petra Brügmann (Netzwerk für Hypophysen - und Nebennierenerkrankungen, Germany) - President
  • Martina Sammarco (AIMEN 1 & 2, Italy) - Vice President
  • Jo Grey (AMEND, United Kingdom) - Secretary
  • Karl Philipp Drewitz (Germany) - Treasurer

February 28th is Rare Disease Day

 

This year the European MEN Alliance (EMENA) launches a patient survey on Rare Disease Day to assess the quality of care for these rare disorder patients throughout Europe. We ask that all patients with MEN1, MEN2a, MEN2b and MEN4 take a few minutes to complete the survey about the care you receive. The survey is available in English, Dutch, German, French, Spanish and Italian (just select your language from the box in the top right corner).

 

                                              THE SURVEY IS CLOSED.

THE RESULTS WILL BE PUBLISHED SOON.

 

The anonymous results of this important survey will be shared where it matters – to you, and to the Endocrine European Reference Network (ENDO ERN). The ERNs were set up by the European Union to improve equality of access to the best care and treatments for rare diseases throughout Europe. The results will form an important knowledge base that will be used by the Endocrine ERN in this process.