More resources on PNH and rare disease policy

PNH related Policy articles

The next level in EU rare diseases research and innovation: This is the time to do more

Meeting the medical needs of the 36 million Europeans living with a rare disease

Short video on Digital Health with event speaker Jelena Malinina, from EURORDIS, and the role of PNH nurses with Louise Arnolds, PNH specialist nurse from the Leeds Teaching Hospital NHS Trust.

Short video on European Union Legislation in the context of Rare Diseases with P4PNH political Co-Chairs, Member of the European Parliament Stelios Kympouropoulos (EPP, Greece), Member of the European Parliament István Ujhelyi (S&D, Hungary) and Member of the European Parliament Maria da Graça Carvalho (S&D, Portugal).

Partnering4PNH - Launch Event of the Policy Consensus Paper

Job code: NP-29565 | Date of preparation: April 2024

Intended for healthcare professional only