Feb
08
2025

Rare Disease Community | Alexandre Méjat

🗣 Throughout the week leading to Rare Disease Day 2025, we will be sharing insights from diverse voices highlighting key pathways to improving the lives of those affected. ️

In this video, Alexandre Méjat, a rare disease patient, PhD scientist in the field of rare diseases, and EURORDIS Director, shares his invaluable insight on the vital role of data collection in achieving quicker diagnoses.

News & Updates

You might also be interested in

This meeting will focus on practical approaches to phenotyping and diagnosis in undiagnosed conditions, including how to define next steps when a diagnosis remains uncertain, and how to strengthen pathways and collaboration around undiagnosed care.
In its first year, ERDERA has brought together 10 000 harmonised genomic and phenotypic datasets from unsolved rare disease cases across Europe, creating a secure, standardised and scalable resource.
On 24 February, in Brussels and online, EURORDIS will bring the rare disease community together for its fifteenth Black Pearl Awards ceremony, held in the lead‑up to Rare Disease Day.