Pulmonary Hypertension Association UK

Pulmonary Hypertension Association UK The only UK charity for people affected by pulmonary hypertension (PH)

"I hope my story could offer hope to some"PHA UK member Patrick Long was diagnosed with idiopathic PAH in 2020, after st...
18/06/2026

"I hope my story could offer hope to some"

PHA UK member Patrick Long was diagnosed with idiopathic PAH in 2020, after struggling with symptoms for years. The 52-year-old responded brilliantly to his treatment and is still able to enjoy cycling - sending us this photo last week after returning from navigating the mountain roads of the Alps.

"I know I am fortunate and this kind of response to meds is rare, but I thought it might lift some newly-diagnosed people my age", he said.

Patrick is pictured by the Col de Colombiere pass sign in the Alps. He rode the steep pass in 51 minutes - 24 minutes faster than in 2018, before he started treatment.

Patrick will be sharing more of his story in a future edition of our member magazine.

Our June e-newsletter has landed in inboxes... so as always, don't forget to check your spam folder ๐Ÿ“ฉAnyone can sign up ...
17/06/2026

Our June e-newsletter has landed in inboxes... so as always, don't forget to check your spam folder ๐Ÿ“ฉ

Anyone can sign up for these monthly email updates, which are separate from our member magazine. Subscribe here: bit.ly/PHAUKmonthlydigest

16/06/2026

๐ŸŽฌ A snapshot of what went on at last month's National PH Service Conference...
People working in PH teams from across the UK's specialist and shared care centres gathered in Birmingham in May to learn from each other, and it was a pleasure to support such a special event.

Weโ€™re giving away one of these fantastic Lego bundles to two lucky children in our PH community. The prizes have been ki...
15/06/2026

Weโ€™re giving away one of these fantastic Lego bundles to two lucky children in our PH community. The prizes have been kindly donated by Michelle Praest, mother of our member magazine columnist Coco ๐Ÿ’œ

To enter, simply email the answer to the following question, along with your name and address, to [email protected]:

๐–๐ก๐š๐ญ ๐๐จ๐ž๐ฌ ๐ญ๐ก๐ž โ€˜๐€โ€™ ๐ข๐ง ๐๐‡๐€ ๐”๐Š ๐ฌ๐ญ๐š๐ง๐ ๐Ÿ๐จ๐ซ?

Two winners will be drawn at random after the closing date of 30th June.

Donโ€™t forget to tell us whether youโ€™d prefer the dinosaur or unicorn set! (You do not need to have PH to enter this competition - it's open to all of our followers)

๐“๐ซ๐š๐ฏ๐ž๐ฅ ๐ข๐ง๐ฌ๐ฎ๐ซ๐š๐ง๐œ๐ž! We know this is a hot topic, and we're updating our list of recommended providers. If you have and y...
12/06/2026

๐“๐ซ๐š๐ฏ๐ž๐ฅ ๐ข๐ง๐ฌ๐ฎ๐ซ๐š๐ง๐œ๐ž!
We know this is a hot topic, and we're updating our list of recommended providers. If you have and you have found travel insurance in the last two years, please tell us who you used.

You can leave a comment below or send us a private message. We'll then share a list to help others enjoy travel this summer โ˜€๏ธ

The PAH treatment Flolan will be discontinued in the UK from 2028 - but patients are not at risk. Full story: phauk.org/...
11/06/2026

The PAH treatment Flolan will be discontinued in the UK from 2028 - but patients are not at risk. Full story: phauk.org/flolan

Dr Iain Armstrong, PHA UK Chair, said: โ€œIโ€™d like to reassure the PH community that despite this being very disappointing news, patients are not at risk as there is stock available for the next two years - and plans are already being put into place to provide alternative treatments for those affected."

๐Ÿณ๏ธโ€๐ŸŒˆ June is Pride Month and here at the PHA UK we recognise and celebrate the influence of the LGBTQ+ community in our ...
11/06/2026

๐Ÿณ๏ธโ€๐ŸŒˆ June is Pride Month and here at the PHA UK we recognise and celebrate the influence of the LGBTQ+ community in our specialist healthcare teams, our patient population, and our supporter networks.

We stand with them and we promote acceptance, tolerance, understanding and kindness. Our PH community here in the UK is truly exceptional, and we all stand stronger together.

It was great to be part of the Royal Papworth Patient Day yesterday - a valuable opportunity for those cared for by the ...
10/06/2026

It was great to be part of the Royal Papworth Patient Day yesterday - a valuable opportunity for those cared for by the hospital's PH team to get together for a day of learning and connections.
Online gatherings are good, but nothing beats face-to-face does it?!

This week is so we're reminding you of our private Facebook group exclusively for those who provide care or support fo...
09/06/2026

This week is so we're reminding you of our private Facebook group exclusively for those who provide care or support for someone with .

This is a safe and supportive space to find connection with others who understand. You can request to join here (please ensure you answer the questions and agree to the group rules): phauk.org/CarersGroup

Follow Carers Week to find out how they are putting the spotlight on caring...

๐‚๐ก๐š๐ญ ๐จ๐ง๐ž-๐ญ๐จ-๐จ๐ง๐ž ๐ฐ๐ข๐ญ๐ก ๐จ๐ญ๐ก๐ž๐ซ ๐ฉ๐ž๐จ๐ฉ๐ฅ๐ž ๐š๐Ÿ๐Ÿ๐ž๐œ๐ญ๐ž๐ ๐›๐ฒ ๐๐‡... Whether youโ€™re living with the condition yourself, caring for someon...
08/06/2026

๐‚๐ก๐š๐ญ ๐จ๐ง๐ž-๐ญ๐จ-๐จ๐ง๐ž ๐ฐ๐ข๐ญ๐ก ๐จ๐ญ๐ก๐ž๐ซ ๐ฉ๐ž๐จ๐ฉ๐ฅ๐ž ๐š๐Ÿ๐Ÿ๐ž๐œ๐ญ๐ž๐ ๐›๐ฒ ๐๐‡...

Whether youโ€™re living with the condition yourself, caring for someone who is, or supporting a loved one, PH-CONNECT is for you.

Although our Facebook groups are private, meaning only those in the group can see the posts, it is still an open forum. This new service allows you to exchange one-to-one messages, and you can find people like you by searching based on type of PH, specialist centre, type of treatment, and more.

Find out more at phauk.org/connect

This is a member-only benefit, but it's totally free to join the PHA UK, and you'll be guided through it all when signing up for PH-CONNECT at my.phauk.org. We hope this service helps people feel less alone with this disease ๐Ÿ’œ

Address

PHA UK Resource Centre, Unit 1 Newton Business Centre
Sheffield
S352PH

Opening Hours

Monday 9am - 3pm
Tuesday 9am - 3pm
Wednesday 9am - 3pm
Thursday 9am - 3pm
Friday 9am - 3pm

Telephone

+443003735367

Website

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