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PNH Support is a Charitable Incorporated Organisation (CIO) registered with the Charities Commission under number 1161518.

The registered office is:

PNH Support
c/o Flat B
11 Tennyson Road
London
NW6 7RT

To view our Constitution, please click here

The current trustees are:
 

Maria Piggin

Maria is a PNH patient living in London. She is a solicitor by profession and is currently completing the European Patients Academy on Therapeutic Innovation (EUPATI)'s Training Course for Patients and Patient Advocates on the Medicines Research and Development Process. 

Maria's email address is maria.piggin@pnhuk.org

Caroline Fookes

Caroline is from the Anglia Region and runs a regular patient/family support meeting in Cambridge.

 

Photo is on it's way

Suzanne Morris

Suzanne has worked in the travel industry for the last 30 years including as gloval Vice President for Travelport. She currently works as a consultant within the same field.

Photo   on it's way

The medical and clinical advisors to the charity are:

Dr Austin Kulasekararaj

Consultant Haematologist

Kings College Hospital

London

 

Louise Arnold

PNH Nurse Specialist

St James's Hospital

Leeds

 


Membership
 
Membership of PNH Support is open to PNH patients in England, Wales and Northern Ireland, their families and carers. Membership provides the opportunity to help shape decisions about actions taken by the charity and other decisions which are made about things affecting PNH patients, to have a say about NHS issues, lobby politicians and help influence decisions on health made by the government and other stakeholders. The patient's voice carries a significant amount of weight in the current environment and membership provides patients, their families and carers with a medium with which their voice can be heard.
 
Membership is free although from time to time we may ask for help with one of our projects, campaigns or surveys.  If you would like to become a member of PNH Support, please send an email to contact@pnhuk.org or fill in the form on the "Contact Us" page.

To contact us about anything else please send an email to contact@pnhuk.org. 

 

Sponsorship

PNH Support is supported by pharmaceutical companies and other organisations. These include Alexion and Ra Pharma.

 


 

 


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