About us

Our national support network helps patients and those around them too, and our community is like no other; a unique group of people committed to supporting each other and raising awareness of this serious condition – in the hope of one day, finding a cure.

Set up in 2000, we now have over 4.500 members. We support people affected by PH to enjoy a better quality of life; raise awareness of PH to encourage understanding and earlier diagnosis; and carry out and assist with research to understand the needs of people affected by the disease, and improve the way it is treated and managed.

We provide support for NHS specialist treatment centres, and those working within the service, and we advocate for patient needs – providing a platform for their voice to be heard loud and clear.

We organise educational and social events to bring the PH community together, and work tirelessly to raise the profile of the condition and ensure equity of access to treatments and services.

Our wide range of resources are all available for free and new ones are always being developed. We also keep members informed and connected via our award-winning magazine.

PH also impacts those around the patient – including family members, friends, and caregivers – and our inclusive support services are for these people too. No-one needs to feel alone with this disease.

Find out more about who we are