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 (pictured below). The following Executive Committee roles were agreed:
- Petra Brügmann (Netzwerk für Hypophysen - und Nebennierenerkrankungen, Germany) - President
- Jo Grey (AMEND, UK) - Vice President
- Carla Pietermann (MEN Belangengroep, The Netherlands) - Secretary
- Karl Philipp Drewitz (Germany) - Treasurer
To improve the diagnosis, care and lives of patients affected by MEN
Aims & Objectives:
- to encourage and assist the foundation and development of new patient groups
- to establish a minimum set of standard guidelines regarding patient care
- to provide, through member organisations, information medically approved by advisors and moral support to those affected by MEN, and their relatives
- to work closely with medical professionals to promote awareness and understanding of MEN
- to encourage global scientific collaboration to enable work-up of long-term morbidity and mortality
|Country||Patient Organisation||Medical Advisor|
|France||Dr Pierre Goudet|
für Hypophysen - und Nebennierenerkrankungen e. V.
|Prof. Ludwig Schaaf|
Prof. Maria-Luisa Brandi
Prof. Francesco Tonelli
Prof. Gerlof Valk
Dr Paul Newey
Prof. Rajesh Thakker
Interested in Joining EMENA?
A representative from every national or regional patient group within the EU representing MEN1, 2, 3 and 4 may join EMENA together with their expert medical advisor(s). Every patient group will remain independent in their normal policies, structure and activities. An annual membership fee may be introduced by the EMENA Executive Committee in the future.
Associate membership from countries outside of the EU is also invited.
The next meeting of EMENA will be at the World MEN meeting in Utecht, The Netherlands between 29 September and 1 October 2016 (exact details to be confirmed).
EMENA representatives attended the International Workshop on MEN in Vienna, 25-27 September 2014, presenting a poster and oral presentation about the Alliance to encourage participation in the organisation and calling for greater collaborative research efforts.