EUHA: enhancing European Collaboration in the field of rare diseases

DATE July 7th, 2023

The EUHA Rare Diseases & European Reference Networks (RD & ERNs) Network met at Karolinska University Hospital (Stockholm) on the 12th and 13th of June. The network discussed the transition of paediatric patients with rare diseases into adult healthcare, the integration of European Reference Networks (ERNs) into national health systems and the diverse methodologies for classifying rare diseases.

Providing high-quality and cost-effective care is especially challenging for diseases with low prevalence. EUHA’s RD & ERNs colleagues are working together towards the identification and implementation of collaborative healthcare pathways for rare disease patients and to improve the way we provide specialised care for complex diseases across Europe. For this reason, the RD & ERNs network met in Stockholm last month to discuss the progress of their current projects.

The meeting brought together strategic expertise from a wide range of stakeholders including representatives of Rare Disease Sweden, the National Board of Health and Welfare, the Centre for Rare Disease at Karolinska University Hospital, Rare Disease project managers and rare disease experts coming from EUHA hospitals.

Paediatric to adult healthcare transition

ERNs and Rare Diseases classification

Last November, in their meeting in Paris, the RD & ERNs network restated their commitment to measure the impact of the transition on patient wellbeing and to drive improvements across Europe. Since then, the group has been preparing a survey to map and evaluate transition protocols within EUHA hospitals. In Stockholm, the group organised a workshop where colleagues from Karolinska Institutet and Karolinska University Hospital presented their transition protocols, and together, they discussed and assessed the design of a survey to identify good practices, tools, and gaps in transition protocols within EUHA hospitals.

The other themes discussed in Stockholm were the integration of ERNs into the national healthcare systems and the different classifying methods for rare diseases. The latter is especially important for the network, as EUHA colleagues have been regularly sharing experiences on rare disease coding and their implementation in their hospitals for the past months.

The RD & ERNs network will meet regularly in the upcoming months to continue working on the action plans derived from a fruitful meeting in Stockholm.

Finally, we would like to thank our colleagues for welcoming us to sunny Karolinska.