PHA Ireland was established in 2005 as a 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 and their carers/families.
It is under the auspices of The Mater Hospital Foundation.
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.
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.
PHA Ireland and patient groups across the world have run a number of campaigns in recent years to raise awareness of the disease and fundraise to provide research and enhanced services for those who suffer from Pulmonary Hypertension. The theme for this year’s campaign is ‘Get Breathless for Pulmonary Hypertension’ where our fantastic supporters and volunteers are encouraged to use sporting, physical activities or indeed any gathering to raise funds and awareness for PHA Ireland. We have been so gratified by the variety and imagination put into these activities by our supporters and want to thank everybody for their endeavours. A quick read of the PH news and updates (left hand side of webpage) will acquaint you with their valiant efforts. Maybe also it might inspire you to consider organising or participating in an event, if so you can contact us at firstname.lastname@example.org to get advice, t-shirts, sponsor cards etc. or perhaps you simply want to make a donation to support our cause. Just click on the ‘Donate Now’ link on the top right hand side of the web page and follow the link to our donations page on the Mater Foundation website. Please be sure to select the Pulmonary Hypertension Appeal on the drop down menu. We thank you in advance for any support you offer us 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 in turn will go towards improving care for the PH population.
One of the previous high impact campaigns was the ‘Pucker Up for PH’ campaign when a blue kiss was adopted as a symbol for PH (blue lips or cyanosis as it’s termed can indicate the presence of PH) and over two years the organization and its members, in association with PH patient groups in 13 countries across the world embarked on a campaign to raise the profile of PH.
People were encouraged to watch a related video and to log onto the campaign website www.puckerup4ph.com to learn more about pulmonary hypertension, spare a kiss & show their support!
With campaigns like this and our current ‘Get Breathless for PH’ we can make a difference! On behalf of people with Pulmonary Hypertension everywhere, thank you for your continued interest and support.