Board of Directors - Luxembourg
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Board of Directors

Alan

Shirley Feider-Rohen


President

 

A special education professional, still working part time in the domain of basic skills of adults.. Active as a volunteer in the field of rare diseases since 2010. Member of the National Rare Diseases Committee. 

 
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: « Together we are stronger ».

 



Alan

Almuth Bredimus


Vice President

 

She has worked for many years as an advisor to the Executive Committee 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.


Alan

Jos Even


Vice President

 
Retired Doctor in Microbiology, member of the ALAN Board of Directors since 2012, President of the National Rare Diseases Committee and President of the Luxembourg Society for Microbiology.
 
Jos Even studied in Paris where he obtained a doctorate in medicine at the Pierre and Marie Curie University, a master's degree in biochemistry at the Denis Diderot University and degrees in microbiology and immunology at the Institut Pasteur. After postdoctoral fellowships at the National Cancer Institute in Bethesda, USA, and at the MRC Laboratory of Molecular Biology in Cambridge, UK, he worked as a researcher in molecular immunology at the CNRS in France. From 2005 until his retirement he was a Head of Department at the Laboratoire Nationale de Santé (LNS) in Luxembourg.
 


Alan

Alphonse Ansay


Secretary

 

Retired public servant (Cadastre and Topography Administration), member of the ALAN Board of Directors since 2013.
 
Since 2003, he has been diagnosed with neuropathy of unknown origin and initially joined ALAN to exchange ideas with people in similar situations. Then, in 2013, he became a member of the Board of Directors because as a person with a rare disease he felt it was important and to engage in and support a patient association.


Alan

Fernand Grulms


Treasurer

 

After studying economics and actuarial sciences at the Universities of Liège and Louvain-la-Neuve, Fernand Grulms worked for 35 years in various areas of finance, including 10 years in actuarial and risk management consulting. Today, he acts as professional director on a number of banks and insurance companies.

 

Fernand Grulms became treasurer of ALAN’s Board of Directors in 2019. Having followed ALAN from the sidelines for several years, Fernand wanted to become more actively involved and share his experience in governance and business management.

 


Alan

Jean-Marie Boden


Member

 

Retired certified accountant and corporate auditor, member of ALAN's Board of Directors since its creation in 1998.
 
He joined ALAN's Board of Directors because he wanted to contribute his professional experience to an association that supports people affected by serious, chronic and often disabling diseases.


Alan

Gilles Boileau


Member

 

Lawyer (avocat à la Cour), member of the ALAN Board of Directors since 2014.

 
He joined ALAN to contribute his legal experience to a dynamic and ambitious team that aims to improve the daily lives of people affected by a rare disease.


Alan

Jean Ewert


Member

 

Retired architect, member of ALAN's Board of Directors since 2010, chairman of the "20 years of ALAN" committee.

 
He joined ALAN's Board of Directors to support the association and promote its activities. He has also been involved for many years n the Luxembourg Téléthon, as a member of the Lions Club Luxembourg.  


Alan

Carlo Friob


Member

 

CEO of a private bank, member of ALAN's Board of Directors since 2014.
 
Looking for volunteer work that allowed him to combine his experience in management and finances with his desire to support a charitable organisation, Carlo Friob joins ALAN's Board of Directors in 2014.


Alan

Snejana Granatkina


Member

 

Artist-painter, graphic designer and illustrator, herself affected by a rare disease. Active member of ALAN since 2010 and member of the Board of Directors since 2017.

 
She contributes her artistic talent and creative skills to help achieve ALAN’s objectives by participating in various artistic projects including the "Esou sinn ech" children's awareness project where she illustrated the brochure.


Alan

Antoni Montserrat Moliner


Member

 

He was responsible for the policies on rare diseases and cancer at the Public Health Directorate of the European Commission from 2004 to 2017, where he initiated the Commission’s communication and the Council’s recommendations on rare diseases and their implementation in different areas.

 

As a person with extensive international experience in rare diseases and being himself affected by a rare disease, he joined ALAN's Board of Directors in 2018 to contribute within his areas of expertise. He was also an alternate member of the Steering Committee of the National Plan for Rare Diseases.



Alan

Julie Scheidweiler-Darné


Member

 

Through her studies in Luxembourg, the United States of America and London (UK) she obtained a bachelor's degree in communication. Since September 2018, she has been working part-time at the Ministry of Health and is doing her best to help people affected by a rare disease. Her nine-year-old daughter lives with a rare, undiagnosed disease.

 

Julie Scheidweiler-Darné joined ALAN's Board of Directors in 2019 and is motivated to work tirelessly to improve the system and the support for those affected by a rare disease.