Geske Wehr

  • General Secretary

Selbsthilfe Ichtyose e.V. Germany

e-mail: jess196759@gmail.com

www.ichthyose.de

Geske Wehr was elected to the Board of Directors of EURORDIS in 2012 and currently serves as General Secretary.

Geske has three children. Her eldest son suffers from an autosomal recessive congenital Ichthyosis.

Geske has been involved in the German patient organisation Selbshilfe Ichtyose e.V. since 1997. Since 2000 she has co-organised their annual meetings and she was part of their Board of Directors from 2001 until 2006. Her current involvement in Selbshilfe Ichtyhyosis consists of supporting members in asserting their claims to the authorities and health insurances.

In 2004, Geske started working towards founding a European Network of Ichthyosis (eni), which was legalized in 2010, and for which she currently serves as Chief Executive on a voluntary basis. In addition, she has also served as a member of the Board of Directors of ACHSE e.V., the German Alliance for Rare Diseases for several years.

Geske is a member of the Council of European Federations.

 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases