Basic Science
Basic scientific research is leading the way in establishing new ways to modify disease processes, improve survival and improve quality of life. Intensive efforts are underway by researchers to better comprehend the genetics of many diseases in respiratory and pulmonary vascular disease.
PHA-Ireland
About Us
PHA Ireland was established in 2005 as a registered charity and patient support organization raising the profile of pulmonary hypertension (PH) and providing help and information for people who are diagnosed and living with this disease in Ireland.
Pulmonary Hypertension Association Charity No. is 9617515D
Why Raising Awareness of PH Is So Vital
Typically the time from presenting with symptoms of PH to diagnosis and effective treatment initiation can be a long and bewildering journey .In some cases the time taken to obtain an accurate diagnosis can be as much as 2-3 years. This delay in diagnosis inevitably leads to significant delays in effective initiation of targeted therapy and impacts dramatically on quality of life and survival outcomes.
The good news is that although no cure for PH currently exists, there are disease specific treatments available which can be initiated at different stages of the disease process. In addition to this, specialized care in expert PH centers can offer a level of expertise and support to people with PH which can impact positively on symptom control, quality of life and survival. The earlier the disease is diagnosed, the better the outcome.
And For Those Of Us Living With PH
Because so few people have heard of PH and even fewer know what living with the condition can mean, it can make people with PH feel extremely isolated and vulnerable.
How You Can Help
PHA Ireland has adopted a blue kiss as a symbol for PH (Blue lips or cyanosis as it’s termed can indicate the presence of PH) and over the next two years the organization and its members, in association with PH patient groups in 13 countries across the world are embarking on a campaign to raise the profile of PH.
Please find below a short video featuring four people who live with PH and who, like me, are trying to do all they can with friends across the world, to raise awareness of the condition they live with.
If you can, please watch the video and/or log onto our campaign website www.puckerup4ph.com to learn more about pulmonary hypertension, perhaps you might also spare a kiss & show your support?
We would be extremely grateful if you could share this email and video with 5-10 of your family, friends or colleagues encouraging them to log onto the campaign website, learn a little about the condition and “Pucker Up 4 PH”. Perhaps they in turn might send this email and attachment to five or so of their trusted friends or family helping us to spread the word about Pulmonary Hypertension far and wide.
With just a few mouse clicks, a few air kisses and a couple of minutes of your time; you can make a significant difference.
Alternatively you can go to the donate now icon on the homepage and make a charitable donation to the PHA-Ireland and all monies will go toward improving services and the addition of new and innovative facilities at the National Pulmonary Hypertension Unit at the Mater Hospital which will go towards improving care for the PH population.
On behalf of people with Pulmonary Hypertension everywhere, thank you in advance for doing so.