Keep informed about the latest information on Rare Hematological Diseases!

The work shows that patients with ß-thalassemia can be clustered into three groups based on six parameters of phenotype severity.

Maria Piggin, the ePAG representative of Paroxysmal Nocturnal Haemoglobinuria (PNH Support) in ERN-EuroBloodNet, is the author of the recently published article on HemaSphere Journal.

All 24 European Reference Networks (ERNs) launch a dedicated website and social media campaign to collect information to help health professionals to find support for Ukrainian patients with rare diseases: diagnosis, treatment, advice.

The 11th edition will be celebrated next summer, 27th June - 1st July 2022.

The in-person training will take place from November 10th - 11th at ISS in Rome, Italy.

Registrations to this course are free and open!

The 5-day training programme has been organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP-RD task partners

The training workshop is free of charge and consists of interactive presentations and discussions on different areas of interest.

The costs for the workshop organization will be covered up to a limit of €25,000.

The Rare Diseases Clinical Trials Toolbox has been developed as a practical aid for developers of clinical trials on medicinal products for human use regardless of therapeutic area.

The game illustrates the FAIRification steps followed by the ERNs registries to make their data more findable, accessible, interoperable and reusable.

The video has been released on the occasion of Rare Disease Day 2022.