Resources - Global Alliance

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.

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.

We are a non-profit organization, comprising PNH patient organizations all over the world

CONTACT

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

donate

The PNH Global Alliance receives 250 euro per year as membership fees. The members are mostly volunteer organizations 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 our administration and pay for travel costs so that we can meet in person once a year. A tax receipt is provided on request.

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