Shirley Feider-Rohen

President

A special education professional, working part time for an adult literacy program. She has been involved in ALAN since 2010. Being affected by a rare disease herself, she has experienced multiple challenges in everyday life. Nonetheless, she is convinced that the situation for people living with a rare disease can be improved. She greatly appreciates intensified networking activity between professionals and patients. Her motto is « Together we are stronger ».

Almuth Bredimus

Vice President

She has worked for many years as an advisor to the management of the Medical University of Hannover. Since her retirement in 2012, she has dedicated her time to ALAN. Since 2014 she is Vice President. She believes the “National Plan for Rare Diseases”, announced by the government, laid the important foundation to improve the quality of life of people in Luxembourg that are affected by a rare disease. ALAN was able to contribute significantly to this foundation. She sees an intention for structural improvement in the implementation of the national plan and believes that linking medicine, therapy and counselling is the right way towards helping those affected by a rare disease.

Jos Even

Vice President

Microbiologiste Physician; Member of the Rare Diseases Group of the Ministry of Health from 2006 to 2010. Member of the Board of Directors of ALAN since 2012.
As President of the Steering Committee for National Plan for Rare Diseases Luxembourg, i hope that this National Plan will be put in place as soon as possible so that the Rare Disease community can benefit as quickly as possible from the means offered by European networks such as The European Reference Networks.

Alphonse Ansay

Secretary

Born in 1954, a retired public employee (Administration Cadastre et Topographie).

I am a member of ALAN since 2003 because I have a rare form of neuropathy. Its origin cannot be diagnosed and I am looking for people in the same situation to exchange ideas. I am a member of the Board of Directors of ALAN since 2013. As an individual with a rare disease, it is important to me to support a patient-led organisation.

Jean-Marie Boden

Treasurer

Gilles Boileau

Member

Jean Ewert

Member

Carlo Friob

Member

Snejana Granatkina

Member

Jos Metzler

Member

Antoni Montserrat Moliner

Member