Lend us your voice
Many voices are stronger than one, so please help us by sharing yours. Pulmonary hypertension is a rare disease but together, we can make our voices heard.
Sharing your PH story
If you have a story about PH, we’d love to hear it. First-hand experiences from people living with or affected by PH can help other people understand or come to terms with the condition.
Maybe you have PH yourself, or care for someone with the condition. You may want to share your coping mechanisms, offer advice to others going through similar experiences, or talk about how a diagnosis has affected your family.
We often feature first-hand experiences of PH in our member magazine, Emphasis.
We also regularly produce booklets and guides, featuring people’s experiences of PH, so there are plenty of ways in which your story can help.
Helping us to put those living with PH first
We regularly seek to explore, in depth, issues relevant to people living with pulmonary hypertension (PH).
Examples include the growing desire for an end to unfair prescription charges for people with long-term medical conditions in England, and in the past our collective voices have overturned a NICE decision to remove all but one form of treatment. At the time, the PHA UK was the only patient organisation to be successful at such a late stage of the process.
In 2016 we ran the first ever PH Awareness Week, which encouraged people to talk about pulmonary hypertension to friends and family, to the media, and online. Look out for this awareness week every November, and you’ll find lots of ways to get involved.
We also often need people to act as case studies for the media when we launch public relations campaigns. We work with an external PR agency so if you choose to be a case study, you’ll receive expert guidance and support, and will play a key part in raising awareness of important issues.
Informing our research and survey work
At PHA UK we often conduct surveys and research to learn more about how pulmonary hypertension affects patients and their kinship, so we can work to help make things better for them.
The Living with PH survey, conducted every five years, is an example of a time when we ask people to share their experiences with us.
We are hoping to make these kind of survey activities more frequent in coming months and years, looking at different important areas, areas that will have been highlighted to us by the PH community in the ‘Living with PH’ surveys we have conducted. If you would like to take part in short surveys please click here. We also regularly work with partners to help support their research studies, for example the National Cohort Study of Idiopathic and Heritable Arterial Hypertension. We may sometimes ask for your help with these types of surveys and studies too.
Sometimes we need to contact a specific group of patients, or PHA UK members, to conduct focused research around a particular topic. If you would be happy to be involved in something like this, why not drop us a line at firstname.lastname@example.org?
Helping inform our research is a great way of making your voice heard, and makes a big difference to our work.
The next PHA UK Annual General Meeting takes place on 15th February 2018, 2-4pm at the PHA UK Resource Centre in Sheffield. The meetings take place every 15 months and are open to all, but if you would like to be involved we politely ask that you let us know by emailing email@example.com or calling us on 01709 761450.
Lending your voice online
Talking about PH on social media is a great way to raise awareness of the condition and help others understand what it feels like to live with it.
You’ll often finding us asking questions on our social media channels, so feel free to join our online conversations!
If you would like to share your experiences, or lend your voice, please fill in the form below or email firstname.lastname@example.org.