PNH Support

Who we are

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 culture and values

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)
• buddying for patients
• signposting to relevant services and information
• a closed Facebook group
• free access to a benefits advisor
• free access to emotional wellbeing resources

Education

We:

• host educational sessions on topics relevant to patients
• 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