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

La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rare, Rare Diseases International est une initiative d'EURORDISRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect est une initiative d'EURORDIS RareConnect 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