Share.Care.Cure
The European Reference Networks (ERNs) are cross-border networks that bring together European hospital centres of expertise and reference to tackle rare, low prevalence and complex diseases and conditions requiring highly specialised healthcare. With over 6,000 rare diseases identified this is a way to bring specialists together to help their patients.
ERNs enable specialists in Europe to discuss cases of patients affected by rare, low-prevalence and complex diseases, giving advice on the most appropriate diagnosis and the best treatment available.
Patients cannot directly access ERNs, but with their consent, healthcare providers can share information and consult an ERN member under national health regulations.
This network is helping to increase the level of expertise of people living with rare diseases and the care they receive through one of over 100 Irish centres of expertise acrossIreland. Irish clinical experts are linked in through designated ERN hospitals. Each Centre of Expertise is specialised in a group of rare diseases and share the mission of providing people with rare diseases with the highest standards of care to deliver timely diagnosis, appropriate treatments and follow-up and long-term care.
This gives our clinicians access to European wide expertise on rare diseases and especially for complex diseases and/or ultra-rare conditions where wider knowledge may be required.
There are currently 24 ERNs across the EU and Norway created under Directive 2011/24/EU (eur-lex.europa.eu) on patients’ rights in cross-border healthcare.
The ERNs currently cover the main clusters of rare, complex, and low-prevalence diseases. As of 2024, the ERNS now include 1,619 specialised centres in 382 hospitals across 27 Member States and Norway.
Since 2020, Ireland is a member of 18 of the 24 ERNs. Orphanet Ireland records Irish Centres of Expertise that have been listed as part of the ERNs for rare conditions.
In Europe there are 30 million people affected by a rare or complex disease, and they often struggle to get a timely diagnosis and treatment. No single country has all the expertise or resources needed to treat every rare disease. ERN’s enable specialists in different countries to collaborate, share knowledge, and provide advice on diagnosis and treatment, particularly when expertise is limited in a specific location or where a condition is ultra rare and complex
This virtual consultation reduces the need for patients to travel long distances for specialized care and facilitates access to the best possible treatment options. The expertise and information travels rather than the patient.
Work of the ERNs
- Patient Care: European specialists discuss cases of patients with rare, low-prevalence, and complex diseases, providing advice on diagnosis, treatment and care. ERNs operate through a secure online platform called the Clinical Patient Management System (CPMS).
- Expertise Sharing: ERNs facilitate the sharing of knowledge and best practices among European experts, this can help to try to ensure patients and PLWRD receive the most up-to-date and effective care.
- Development of care pathways and patients’ journey: Care pathways describe the process involved in managing a clinical condition. They include details on what to do, when to do it, who does it, and where. A care pathway is a tool to enhance the coordination and quality of care across this continuum by improving patient outcomes, promoting patient safety, increasing patient satisfaction, optimising the use of resources
- Virtual discussions across specialists in Europe to discuss cases of patients affected by rare, low-prevalence and complex diseases, providing advice on the most appropriate diagnosis and the best treatment available
- developing, updating, and appraising Clinical Practice Guidelines, providing training and education courses, and working on registries
- Registries: ERN’s have set up, or they may support, transnational registries to collect pseudo-anonymised data on patients with rare diseases. They are an important component of digitalised European healthcare establishing a rare disease registry ecosystem based on interoperability and FAIR principles. They harmonise data on rare disease patients across the EU, and they canmake the anonymised data that is collected available to researchers, public authorities, industry and other stakeholders on different conditions to improve the medical care of patients.
- Research activities: ERNs are involved in clinical trials and prioritise unmet research needs in the field of rare diseases to put the patient voice at the core of research needs.
- Support for Clinical Studies: ERNs can also facilitate clinical studies and research, contributing to the development of new treatments and guidelines for rare diseases.
ERNs in Ireland
Since 2022, Ireland is a member of 18 of the 24 ERNs.
List of 24 ERNs (PDF, 114 KB, 1 page)
Some ERNs also offer training for patient representatives and advocates, such as the EJP RD patient training program (ejprarediseases.org)
