Help line services
EURORDIS promotes, networks, trains and advocates on behalf of Rare Disease Help Line Services. The Rapsodyonline website includes a full listing and cartography of existing services around Europe.
What is the European Network of Rare Disease Help Lines (ENRDHLs)?
Information and support is one of the most important services that rare disease patient groups can provide. In order to create a service that provides quality information and support, patient organisations need guidance and assistance. The ENRDHLs aims to provide this support. The ENRDHLs was created during the Rare Disease Solidarity Project project (RAPSODY) (September 2006 to April 2008) where the priority was to increase the quality of services by sharing European rare disease help lines’ 1expertise around Europe.
Over time the network has built up a series of tools and support mechanisms that are being offered to rare disease help lines around Europe once they join the network. However, for these tools to work, there are certain membership criteria that need to be respected.
Why is this issue important to rare disease patients?
Rare Disease patients are frequently faced with a critical lack of information and support. Upon hearing their diagnosis, their first point of contact is often the local patient organisation for their disease. If a patient organisation does not exist in their area or cannot supply the correct, validated information, the patient is left feeling isolated. Help Lines are the only service that can offer social, psychological and information solutions to all of these needs. It is essential that support for services of this sort be available for patients in every European country and that they provide quality information.
How to address the issue?
The objectives and actions of EURORDIS’ European Network of Rare Disease Help Lines, as it exists today are the following (all of the following were developed in accord with the original RAPSODY participants):
Increase the quality of service provided by rare disease help lines around Europe by sharing expertise and creating a common approach.
Provide support to European help line services by organising training sessions on how to use Rapsodyonline or on how to ‘find validated information sources online’.
Improve the visibility of help line services at European and national level through specific communication actions or the Rapsodyonline cartography listing.
Increase funding opportunities for member services and the network itself by taking advantage of European, international or national grants and private industry opportunities.
Show the utility of the service by compiling overall activity reports including as many member help lines as possible through the annual Caller Profile Analysis, a statistical report involving data from all members of the network.
Take advantage of new technologies to promote and increase the visibility of the network. For example the 116 common number 2 for the harmonised social services network.
What does the network offer?
In line with its main objective of sharing information and expertise, as well as ensuring help lines are recognised and properly funded by public authorities, the Network offers the following types of benefits:
The Commission Communication on Rare Diseases specifically mentions the need for rare disease help lines at national level. In order for these recommendations to be implemented: (a) EURORDIS is providing its Network members with Advocacy Fact Sheets to help them argue for the development and funding of national help line services (b) EURORDIS also requests that these services be included in the EUROPLAN detailed recommendations for national plans and discussed at the 16 national conferences organised by national rare diseases alliances under the EUROPLAN-EURORDIS activities in 2010.
(a) On-line searchable maps of services around Europe are already available on Network website, serving to promote services amongst the rare disease patient community. (b) The Network takes an active part in the annual Rare Disease Day with its own communication tools and messages. (c) EURORDIS is already well advanced in creating a future unique European 116 number, so to provide access to the network of rare disease information centres all over Europe, wherever patients live and travel.
A call recording interface and database (rapsodyonline.eurordis.org) to harmonise call recording methods, so as to (a) collect essential data on enquiries and enquirers’ profiles and be able to create European-wide statistical data, and to (b) compare national databases of very isolated patients so as to match them across Europe and enable them to find someone like them.
Capacity Building, Exchange and Support
(a) Tailored capacity building sessions on how to search for validated sources of information online and to navigate the most relevant databases in the world. (b) Training on how to use the call information recording tool. So far, EURORDIS has organised onsite visits to set up rapsodyonline and train users in Romania (RONARD), Portugal (Rarissimas), Belgium (RaDiOrg) and Italy (UNIAMO) and is planning six more visits in 2010. (c) EURORDIS is also organising face-to-face workshop events to bring together the coordinators of the national rare disease help lines so as to exchange information, experiences, and be able to develop common approaches.
How to get involved ?
Those interested in joining the Network will need to fill out an application form and comply with certain basic requirements, such as using the OrphaCode to record information about a disease; this is important, as the use of OrphaCode will allow the new International Classification for Rare Diseases under development under WHO auspices to be immediately taken advantage of. Member help lines need to be legally registered in Europe and need to respect local data privacy legislation. All applicants must agree to attend at least one annual network meeting and to supply basic information from their calls over a month-long period, in order to contribute to the annual Caller Profile Analysis Report, which serves to develop common statistics, based on patients’ information needs across Europe, as well as to progressively demonstrate the utility of the services at the European level.
For more information:
Eurordis Newsletter articles
1Beneficiaries of the Rapsody project: Eurordis, AFM Telethon, Barretstown, Children Living with Inherited Metabolic Diseases (CLIMB), Federacion Espanola de Enfermedades Raras (FEDER), Frambu, Orphanet, Fundacio Doctor Robert, Rare Disorders Denmark and State Institute for Drug Control Czech Republic
2The 116 common number for Harmonised Social Services is a programme organised by DG Information Society of the European Commission: