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) 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

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.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 Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases