The Alliance will adhere to the following codes of conduct when engaging with pharmaceutical companies
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.
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.
PNH Global Alliance
By Address: APN Backoffice BV
Postbox 91
4000 AB TIEL
The Netherlands
Chamber of Commerce number 75270854.
Info available at www.kvk.nl
Bank NL77ABNA0877597847
The PNH Global Alliance receives €250 per year as membership fees. The members are mostly volunteer organisations with very limited financial resources, if any. The work of the Alliance is undertaken predominantly by patients, who do this voluntarily alongside their paid jobs. Contributions will enable us to continue to outsource some administration and pay for travel costs so that ideally we can meet in person once a year. A tax receipt is provided on request.