Resources

relevant codes of conduct

The Alliance will adhere to the following codes of conduct when engaging with pharmaceutical companies 

connected stakeholders

eurobloodnet

EuroBloodNet  is the European Reference Network in Rare Hematological Diseases (RHD) was established on 1st March 2017 and seeks to guarantee that European citizens affected by a RHD benefit from the same level of highly specialised care, thereby improving their overall quality of life, and reducing inequalities across Europe on access to health care independent from the patient’s country of origin or country of professional practice.

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IPIG

The International PNH Interest Group is a network of PNH-specialised fysicians from all over the world who are dedicated to enhancing and expanding professional knowledge about paroxysmal nocturnal hemoglobinuria (PNH) and related disorders in order to improve patient treatment and care.

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