Rare Diseases: How European reference networks have improved the lives of rare disease sufferers immeasurably

But more can, and must, be done to work together and take ERNs to the next stage, says EURORDIS HealthCare Director Inés Hernando.
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By Inés Hernando

Inés Hernando is European Reference Networks and Healthcare Director at EURORDIS

26 Feb 2021

The European Reference Networks (ERNs) are one of the most significant achievements that the rare disease community as a whole has ever accomplished. For over fifteen years, we have worked alongside dedicated patient organisations, clinicians and policymakers across Europe to see the idea evolve into twenty-four Networks, connecting rare disease centres of expertise from across 27 EU Member States and Norway, to share knowledge, improve care, and provide treatment.

Key findings from a survey on patients’ and carers’ experience of medical care for their rare diseases, released in January 2021, gives us a positive albeit small glimpse into the experience of care provided by the expert centres in the ERNs.

Respondents who assessed four ERNs healthcare providers indicated that they have been waiting for a shorter amount of time to get a confirmed diagnosis of a rare or a complex disease after they first sought medical advice; have a significantly better experience with their care; and are significantly more satisfied with their care.

“Our children, families and community deserve equitable access to high quality care treatment and diagnosis”

Now, at a time when we need greater EU cooperation in health, we also need to carefully plan the next steps to reach the ERNs’ true potential and integrate this new structure into our national health systems. Substantial investment from different sources is also needed to match the ambition of the Networks.

There is a window of opportunity now, as healthcare systems are increasingly inclined to embrace new ways of working, and as the COVID-19 pandemic has put the spotlight on health cooperation across Europe. This comes at a crucial point, as the EU shapes its ambition for a European Health Union over the coming years.

The role of Member States in taking ERNs to the next stage is pivotal. National and regional health authorities must take political ownership and leadership, define accreditation and support systems for Centres of Expertise, while defining the processes to adopt and use the knowledge assets curated and created by the Networks. 

A mature ERN system will leave no person living with a rare disease in uncertainty regarding their diagnosis, care and treatment. Our vision is articulated around four domains: areas of collaborative work (care, knowledge sharing, research and training); the common services to support the 24 Networks; the funding, governance, scope and structure arrangements; and the national dimension of ERNs. Our children, families and community deserve equitable access to high quality care treatment and diagnosis.

To achieve this vision, all stakeholders and partners in the ERNs community must keep up with the original ambition of the Networks and continue working together. This will be an essential part of taking forward the recommendations from the Rare 2030 Foresight Study for Rare Disease Policy. 

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