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 voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases