What is PNH Support?
PNH Support is a Charitable Incorporated Organisation (CIO) registered with the Charities Commission (number 1161518). The organisation was started in 2015 by patients who recognised the need for an independent, patient led, legal platform through which we could engage with our stakeholders.
As a result of PNH being an ultra rare disease, it is not uncommon for a person living with PNH to never meet another person with the same condition. PNH Support values peer-to-peer support and considers it to be an essential and valuable way for people living with PNH (and their families) to share their experiences, support one another and reduce isolation. We wanted to create a community that could engage with one another and with our stakeholders because together we are definitely stronger!
Our Vision
Our vision is “No PNH patient in England, Wales and Northern Ireland is alone. All are represented and enabled to live to their full potential with PNH.”
Our Mission
We provide support through educational resources and advocacy, as well as peer-to-peer contact.
How we achieve our mission
Patient and Family Support
We host, organise and facilitate:
- patient meetings (online and face-to-face)
- patient and family conferences (biennually)
- a buddying system for patients
- signposting to relevant services and information
- a closed Facebook group
Education
We:
- host educational sessions on topics relevant to patients
- patient and family conferences (biennially)
- share news and updates on research and treatments
- create information for patients
Advocacy
We advocate on behalf of the patient community with stakeholders including:
- the National Institute of Health and Care Excellence (NICE) which decides which treatments are paid for
- the NHS including NHS England
- homecare companies delivering treatments to patients’ homes
- pharmaceutical companies making treatments for PNH
Governance
PNH Support is governed by a Constitution which is based on a template for CIOs provided by the Charities Commission. You can download our Constitution below:
Medical advisor
PNH Support has a medical advisor who has reviewed the medical information provided on our website. This information does not replace medical advice which you should obtain from your doctor.
Dr Austin Kulasekararaj
Consultant Haematologist
PNH National Service
Kings College Hospitals NHS Foundation Trust
Department of Haematology
Hembleden Wing
Denmark Hill
London
SE5 9RS
Email: kch-tr.pnh@nhs.net
