We are the only charity in the UK dedicated to supporting people affected by the rare disease pulmonary hypertension (PH).
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
At the PHA UK we are proud to be part of The Patient Information Forum (PIF) – a membership organisation and network for people working in health information and support.
We’re committed to ensuring the information and resources we produce are trustworthy and of the highest standard, and we’re delighted to say this has earned us a PIF quality mark – a prestigious tick which is only awarded to organisations who follow high quality standards when producing health information.
QUALITY MARK CRITERIA
How does your organisation produce information?
SYSTEMS – The organisation produces health information in a consistent and systematic manner
How are staff trained and supported to produce high-quality information?
TRAINING – Staff involved in the information production process receive ongoing training and support
How do you identify genuine information need?
IDENTIFYING NEED – Resources are produced to meet a genuine need
What evidence are you using to produce high-quality health information?
EVIDENCE – Evidence used is relevant, up to date and from a reputable source
How are users involved in the development of health information?
INVOLVING USERS – Users have been involved in the development of information resources
How do you ensure information is clearly communicated to users?
CONTENT – Resources are written to meet the health literacy needs of the target audience and use appropriate language and tone
Is your information easy to access and use?
LAYOUT AND DESIGN – Resources are easy to access and navigate
How can users give feedback on your information?
FEEDBACK – There is a clear mechanism for users to feedback
How do people find your information?
DISSEMINATING AND MARKETING – Information resources have been promoted to maximise their reach
Does your information make a difference?
EVALUATION AND IMPACT – The impact of the resource has been measured
Do you have any feedback about any of our information or resources? Part of our commitment to upholding our standards is to encourage and act on feedback from our members. Please complete this form, email office@phauk.org or call 01709 761450
