The European Network of Rare Disease Help Lines
All Rare Disease Help Lines invited to apply to join this Network
The European Network of Rare Disease Help Lines (ENRDHLs) was created in the context of the EURORDIS’ European Commission financed Rapsody project. One of the main objectives of this project was to improve the quality of services provided by European help lines. In order to fulfil this objective, five national rare diseases information services from around Europe came together to share their expertise and propose ways in which the network could support other services in Europe.
Over time, this core group of help lines has created a help line directory and a set of tools to support each other and newer help lines. Those patient organisations aspiring to set up a help line have received specific training on how to use the tools provided by the Network.
Today the Network includes a formal application procedure so that those who decide to become members and agree to common standards can benefit from tailored training and support. “The European Network of Help Lines now needs to share the expertise that it has built up in a more organised manner. A Steering Committee will appraise the applicant’s services and offer tailored advice on how to improve their service,” says Shane Lyman, Health Policy Coordinator at EURORDIS. “We are expecting to have an enlarged core group of at least 15 signed up members for the first network meeting scheduled the day before the 5th European Conference on Rare Diseases in Krakow in May 2010.”
What will your information service get out of joining the network?
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:
Advocacy: 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 Facts Sheet to help them argue for the development and funding of national help line services (b) EURORDIS also requests that these services are 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.
Communication: (a) On-line searchable maps of services around Europe are already available on EURORDIS’ Website and the 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.
Technical tools: (a) A call recording interface and database (www.rapsodyonline.eu) to harmonise call recording methods, so as to collect essential data on enquiries and enquirers’ profiles and be able to create European-wide statistical data (b) to 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.
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.
“The idea is not to exclude any services, on the contrary the membership policy should be as inclusive and representative as possible of the range of services currently available,” says Shane Lyman. “However, we need to ensure that standards of excellence are part of the admission procedure and that they will use converging methods to enhance the quality of the services provided. To do this, the Network will appraise each applicant’s level of development and work with new members towards a uniform system, where all services are implementing a convergence plan in order to increase their level of service.’”
Travel and accommodation to attend the network meeting will be covered for the first 15 help line’s approved applications. The Workshop, which is a satellite to the European Conference on Rare Diseases in Krakow on 13-15 May 2010, will serve as an opportunity for participants to get to better know each other’s way of working, to present the European Network of Rare Disease Help Lines in detail, and for all members to elect a Steering Committee to govern their activities. To discuss your application and to register for the Workshop, please contact: firstname.lastname@example.org.
For more information:
Eurordis Newsletter articles
This article was first published in the Eurordis Newsletter of February 2010
Author: Paloma Tejada
Photo credits: © istock, EURORDIS, Google images
 Orphanet is a European database of information on rare diseases. Each rare disease is given an orphan code number corresponding to the 10th international classification of diseases established by the WHO (where available).