The European Health Data Space and rare diseases

The vast majority of rare disease patients are willing to share their data to improve diagnosis of their disease and develop new treatments. Let’s make sure that data sharing becomes a reality, writes Tilly Metz
Conceptual image of Kawasaki disease

By Tilly Metz

Tilly Metz (LU, Greens/EFA) is a member of Parliament’s Environment, Public Health and Food Safety Committee

23 Feb 2023

I'm glad to say that I’m hopeful that this year will bring new policy developments which will contribute to making the lives of patients with rare diseases easier.

Today, among the most salient issues facing rare disease patients are obtaining a timely and accurate diagnosis and accessing the treatments and therapies that they need. I look forward to making sure that the European Health Data Space (EHDS) addresses these challenges and provides adequate support to these patients.

Indeed, the EDHS could be very useful to the European Reference Networks – connecting the centres of knowledge, skills and expertise in the field of rare diseases and complex conditions – but also to coordinate clinical trials.

My hope is that people with rare diseases can benefit from the EDHS as early as possible, which should lead to better health outcomes and make it easier for them to share their data with different healthcare professionals and in different settings to enable the delivery of healthcare provision.

This article was commissioned as part of a series focused on Rare Disease Day 2023, in partnership with Takeda, Eurordis, Efpia and Eucope. Click here to read the full report

With 97% of rare disease patients willing to share their data to improve diagnosis of their disease and develop new treatments, my objective will be to make sure that efficient and secure data sharing becomes a reality. 

Besides, I believe that access to patients' data should be made conditional to early accessibility and affordability of new developed treatments.

Read the most recent articles written by Tilly Metz - Public demand is clear but political will could be a blocker for EU action in health


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