PHocus2021

Hear our
voices...

Listen to the reality of life with PH, revealed in the UK's biggest ever survey into the lived experience of pulmonary hypertension.

Listen to us here ›

The PH community
has spoken...

The results of the biggest ever study into what it means to live with pulmonary hypertension are here.

Access the results ›

Breathless, not voiceless.
It's time to turn up the volume for PH patients.

Hear our voices ›

Breathless not voiceless...

"PH makes me feel depressed about the things I used to be able to do. So many health professionals don't know about the disease so how can we expect the general public to?"

Hear more patients ›

Putting a political PHocus
on pulmonary hypertension

Find out more ›
Previous Pause Play Next

Our 4 aims for positive change…

Pulmonary hypertension, PH for short, is a rare, life limiting condition that causes high blood pressure in the blood vessels connecting the heart and the lungs (the pulmonary arteries). More

1

Reducing the time to diagnosis for pulmonary hypertension.

Read more ›

2

Improving the health, wellbeing and quality of life of patients with PH and their kinship.

Read more ›

3

Ensure equity of access in the UK to evidence-based PH treatments for all.

Read more ›

4

Reduce the financial hardship incurred by living with PH.

Read more ›

Latest news from PHocus 2021

Research reveals financial impact of rare heart and lung disease

PRESS RELEASE: People living with the rare disease Pulmonary Hypertension are suffering financial distress and an unfair battle for benefits, according to new research.

The power of the patient voice

Just before Christmas, Selexipag was approved for patients in England – and the patient voice made a big difference in securing success.

Patient group welcomes decision to fund new rare disease drug in England

Patient voices have helped secure the approval of a new drug designed to improve the lives of people affected by a rare, life-limiting disease in England.

MPs pledge their support for people with PH

MPs representing constituents from across the country joined us to find out more about pulmonary hypertension at Westminster this week.