Anja Helm

  • Senior Manager of Relations with Patient Organisations

Anja Helm

Anja Helm joined EURORDIS in 2005 as Manager of Relations with Patient Organisations.

Anja is responsible for two-way communication between EURORDIS and its members.

Her role is to develop the network of rare disease patient organisations, reaching out to as many rare diseases and countries as possible, and to empower patient groups through information and networking. Anja is in charge of the CNA (Council of National Alliances), the CEF (Council of European Federations)RareTogether! and the EURORDIS Membership Meetings.

With over twenty years of experience working in an international environment, she has vast expertise in managing European membership networks, conference organisation and information communication.

Anja has lived with Guillain-Barré syndrome.

Originally from Germany, she is fluent in German, English, French and Spanish.

Telephone: +33 1 56 53 52 17
Email: anja.helm@eurordis.org

 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases Internacional, é uma iniciativa da EURORDISRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases