Directive 2011/24/EU on patients’ rights in cross border healthcare (Article 12)
According to the legislation the Member States Competent Authority is required to provide a written statement of endorsement for their Rare Disease Health Care Provider verifying that its participation in the proposal to establish a European Reference Network (ERN) is in accordance with its national legislation before the application is made to be assessed to join an ERN.
European Reference Networks
Health systems in the European Union aim to provide high-quality, cost-effective care. This is particularly difficult however, in cases of rare or low-prevalence complex diseases which affect the daily lives of around 30 million EU citizens.
European Reference Networks are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources.
Application Process for Healthcare Providers in Ireland
All healthcare providers wishing to be put forward by Ireland for consideration for entry to European Reference Networks must undergo an assessment process on their ability to meet specific criteria. There are two potential levels of membership of European Reference Networks.
1. Full members
Healthcare providers will be eligible to apply to become a full member provided there is not already a full member from that country in the European Reference Network. The call for full members of European Reference Networks is expected to open in Spring 2019. Further information about the Irish application process will be available shortly.
2. Associated National Centres
Associated National Centres are healthcare providers that provide multidisciplinary expertise in rare diseases but may not have the capacity to fulfil all of the criteria necessary for full membership of a European Reference Network. One associated member application may be nominated to a European Reference Network provided there is not already a full member or other associated member already nominated to join a particular network.
Further information on European Reference Networks including Video clips, Factsheets, and information fliers for patients and clinicians is available from the EU ERN Webpage
Healthcare providers interested in applying for European Reference Network membership should make contact with the National Clinical Programme for Rare Diseases by emailing email@example.com
Registration on Orphanet is an important step in the application process. Further information about this is below.
Potential members of European Reference Networks can be one single healthcare provider or a consortium of healthcare providers. However, it is recommended by the Health Service Executive that when applying to join a European Reference Network one application should be made which represents and integrates all national paediatric and adult healthcare providers nationally. In this instance the consortium of healthcare providers will require one named coordinator.
Both full and associated members will require approval by HSE Acute Operations and a letter of endorsement from the Department of Health.
Registering on Orphanet:
- Identify a Consultant clinical lead in a permanent role with your service
- Register the service on Orphanet as a Centre of Expertise:www.orpha.net
- The Orphanet Quality Criteria Form describes the information required to register the service.
- You can also read the guide for registering on Orphanet. If you cannot complete all sections at a minimum please complete the mandatory criteria.
- Click here to see an example of a completed Orphanet Quality Criteria Form
To learn more about Orphanet read our Orphanet Overview for Clinicians
- Services registered on Orphanet are validated by Orphanet Central.
More Information about Orphanet: The European Rare Diseases Portal
All Irish rare disease health care providers are recommended to maintain an up to date registration of their clinical centre of expertise on Orphanet https://www.orpha.net/consor/cgi-bin/index.php including the completion of the Orphanet Quality questionnaire describing their multidisciplinary expertise in rare disease management. Assistance with registration is available through Orphanet Ireland 01 809 7448 or firstname.lastname@example.org
European Reference Networks Video Clip
To view the current ERN listing refer to the following link
List of European Reference Networks