The European Network of Rare Disease Help Lines


New steps and challenges

Rapsody Online ServicesThe European Network of Rare Disease Help Lines was created in September 2006 by a core group of rare disease help lines led by Climb from the United Kingdom. It is coordinated by EURORDIS and includes participants from Italy, Spain, Denmark, United Kingdom and France. The network was set up as part of Rapsody, a two-year project designed to improve quality and access to essential services for rare disease patients throughout Europe, including help lines. Rapsody ended in April 2008 but EURORDIS is committed to continue the work that has started. “We look at the European Network of Help Lines as a major EURORDIS commitment to provide more and better quality information on rare diseases to everyone in the EU. We will consolidate the work done by the founding help lines in the previous two years. We will structure this network to promote the active participation and integrated coordination of existing help lines, run by professionals as well as volunteers. We will support the new initiatives undertaken in 2009. Most importantly, we will strongly support local advocacy efforts for the creation of national help lines, free of charge, in each Member State, as part of the National Plan on Rare Diseases,” says Yann Le Cam, Chief Executive of EURORDIS.

One particular initiative which the network members have been looking at closely is the new 116 common number programme for social services. This is part of a new scheme at the DG Information Society of the European Commission that seeks to reserve the national numbering range beginning with 116 for harmonised services of social value. So far, only one 116 number has been approved and this is the Missing Children Number that many Europeans are already familiar with.

EURORDIS and its partners are presently in talks with the European Commission regarding the possibility of submitting an application to reserve a 116 common number for rare diseases. 'This is a very promising opportunity for the network and something to work towards in the long term,' argues Thomas Heuyer, Director of the French help line Maladies Rares Info Service. 'A common European number for Rare Diseases would allow European callers to be redirected towards their national service when travelling abroad as well as to obtain information services in several languages. This unique EU number would also serve as a focus for help line information campaigns at national and European level.'

workshop | atelier | taller | seminario |Isabelle Vandoorne of the Information Society and Media Directorate-General at the European Commission will be speaking about these exciting possibilities at a workshop on the 9th of May. The Workshop, which is part of EURORDIS Annual Membership Meeting 2009 in Athens, will serve as an opportunity to present the European Network of Rare Disease Help Lines to those who are planning to set up their own help line and are not yet familiar with the Network. It will also be the chance for those who have followed the work done by the Network from the beginning to get an update on the latest developments, namely the online tools, training materials and the membership application process.

One of the most interesting activities the Network has been working on is the development of a common call recording tools website. The website has been set up in order for registered help lines to record information regarding calls they are getting in a standard way. 'This website is not only useful because it gives members access to call recording methods that have been tried and tested by more experienced help lines,' explains Shane Lynam of EURORDIS, 'it also means that, by using the same tools, we will be able to compile call data on a European level, which could then be used for public health policy purposes.'

Indeed it is hoped that, as more help lines apply to join the network and as their tools are harmonised, the information about the requests for information will be used to give out much needed statistical data, showing how useful these services are and what are the requirements of the callers. This in turn could be used to advise policy-makers at the national and European level. The online call recording tools are presently being fine-tuned and three help lines will be testing them out in the weeks ahead.

Those who are interested in getting involved will also be glad to know that a formal membership application is being put in place. The idea behind the Helpline | centre d'appel  | línea de ayuda  | linea di assistenza  | linha de atendimento  | Beratungsdienstesapplication process is to ensure that certain standards are met before joining the Network. 'Applying high standards and ensuring that certain criteria are met is important, especially in the early stages,' explains Shane Lynam. 'By ensuring that the network members are reading from the same page and that they undertake to apply certain standard methods in their call recording guidelines, the network will have a much greater chance of using converging methods to enhance the quality of the services provided.'

In order to help potential members of the Network meet these standards, EURORDIS and its partners have planned several training tools and sessions. The workshop in Athens will be the perfect opportunity for people interested in joining to find out about this and more.


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This article was previously published in the April 2009 issue of our newsletter.

Author: Paloma Tejada
Photo credits: © EURORDIS & European Community, 2009

Page created: 19/08/2009
Page last updated: 24/06/2010
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