Lunchtime Meeting on Promoting an Active International Porphyria Patient & Healthcare Professional Network
Friday, May 17th Luzern
At the P&P conference and the Porphyria Patient Day, Porphyria patient representatives are invited to meet as a group, to enhance the international network across patient organizations and between them and the healthcare professional community, and discuss opportunities to realize these objectives.
The core of the proposal is to use the recently launched RareConnect Porphyria Community (www.rareconnect.org/en/community/porphyria) as the foundation for an international patient and medical expert network. We will encourage a strong active participation and propose a concrete project that we would like to promote through the RareConnect network
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