Help Lines

The European Network of Rare Disease Help Lines (ENRDHLs) was created by EURORDIS and partners in order to provide support and share experience and information between national or disease specific help lines across Europe.

European Network of rare disease help lines

Initiated during the Rare Disease Solidarity Project (RAPSODY - September 2006 to April 2008), the European Network makes it possible for emerging help line services to be assisted in confronting the questions posed when setting up a new service; for existing help line services to increase the quality of service they provide to share best practices; for help lines to compare their lists of isolated patients with other network members and increase the chance of patients meeting someone with the same diagnosis; to benefit from cost saving technical support by providing call information recording tools; or to receive specifically focused training sessions.

EURORDIS, on behalf of the European Network of Rare Diseases Help Lines, has asked the European Commission DG Connect to reserve a unique six digit 116 phone number for help lines for rare diseases across Europe. If this is accepted, European citizens from all Member States, and patients and families in particular, will have one single number to dial wherever they are in Europe every time they need support or information on rare diseases. 


Page created: 23/07/2013
Page last updated: 22/08/2018
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