“Nothing about us should be without us” by Maria Piggin
On Rare Disease Day 2023, the Lancet Haematology journal published a patient voice piece written by Maria Piggin, Chair of PNH Support and PNH Global Alliance entitled “Nothing about us should be without us”. This piece talks about PNH and how Maria came to found PNH Support and the PNH Global Alliance and the work the Alliance is doing to achieve its objectives to benefit all PNH patients globally.
Read the piece here
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.
