Raising awareness and taking action for rare diseases

DATE February 27th, 2023

Providing high-quality care is especially challenging for rare diseases. For this reason, EUHA joins the global awareness-raising campaign, Rare Disease Day, to show solidarity with the rare disease community.

EUHA Rare Diseases & ERNs Network

By supporting the EUHA Rare Diseases & European Reference Networks (RD & ERNs) Network, EUHA supports colleagues across Europe to exchange ideas, discuss best practices and propose joint strategic projects in the field of rare diseases.

EUHA’s RD & ERNs colleagues are working together towards the identification and implementation of collaborative healthcare pathways for rare disease patients and to make sure university hospitals are well equipped to provide high-quality specialised care for complex diseases across Europe.

The network gathers significant strategic expertise from leading university hospitals in Europe and is currently focused on promoting the implementation of transition protocols regarding paediatric to adult healthcare for rare diseases. To do so, the group is working on mapping transition in EUHA hospitals to identify good practices, tools, and gaps. In addition, the EUHA RD & ERNs network is concerned about the unmet need for harmonisation of rare disease classification and coding both on patient journal systems and in registries

Watch the video to learn more about the network: