World PH Day 2023

03 May 2023

On this Friday, May 5th, people around the world will participate in World PH (Pulmonary Hypertension) Day to raise awareness of this frequently misdiagnosed disease, advocate for access to PH diagnosis, treatment and care and celebrate the lives of those living with PH.

Our thoughts are with our members, their families, friends & carers who endure the incredible hardships of this unrelenting disease 365 days a year while we, with our worldwide collegiate PH organisations, ask those whose lives are not touched or blighted by Pulmonary Hypertension to join us on World PH Day to advocate with and on behalf of PH sufferers.

All serious diseases can leave sufferers debilitated and with feelings of isolation, but this is more acute for sufferers of a rare disease like PH. Equally patients can get a sense of hope from the support and understanding of both fellow sufferers and the able bodied who wish to support them and lift their spirits. It is the goal of PHA Ireland and the many PH groups across the globe to bring this sense of support and hope. We thank you for your support in the past and hope for its continuance as we strive to mitigate the terrible burden of suffering PH not just for this day but for every day.

About Pulmonary Hypertension:

Pulmonary hypertension is high blood pressure in the lungs. It is different than the blood pressure that your doctor measures with a cuff. When a person has PH, the arteries in the lungs become damaged, narrow or stiff, putting pressure on the right side of the heart as it works extra hard to push blood through. If left untreated, PH can lead to right heart failure and death.

People with PH can experience symptoms such as shortness of breath, dizziness and fatigue. Because these symptoms can mirror common, less-threatening illnesses, patients often go years without being diagnosed, or are misdiagnosed as having other illnesses such as asthma or COPD. With early and accurate diagnosis, proper treatment can extend and improve PH patients’ quality of life. People who think they might have PH should seek diagnosis and treatment from a PH specialist. Other symptoms include chest pain, fainting, swelling of the arms, legs, ankles or abdomen, dry cough and Raynaud’s phenomenon.

PHA Ireland featured in Mariposa Journal 2021

18 February 2022

We’re delighted that PHA Ireland feature in PH Europe’s Mariposa Journal’s winter edition for 2021 covering both the PHull Bull Triathlon awareness and fundraiser event in September 2021 and the release of the bespoke Pulmonary Hypertension (exercise) rehabilitation programme to coincide with PH awareness week in November 2021.  The article details the contributions of Patrick Corkery (a former patient with PH, who swam
the English Channel, just 20 months after pulmonary endarterectomy surgery) and the PH Mater Hospital team inspiring and delivering the PHBull Tri event – read more here-. Also detailed is the work of Ciara McCormack, an expert clinical exercise physiologist working with PHA Ireland in devising a bespoke Pulmonary Hypertension (exercise) rehabilitation programme. It aims to provide PH patients with an opportunity to engage in some light exercises within their own home to help maintain their aerobic fitness and muscular strength – see the video here-.

You can view and download PHAE’s Mariposa Journal Winter 2021 at this link. The content relating to PHA Ireland is on page 57 & 58 with some further related press clippings on page 113.

PHA UK Covid Survey Results

14 November 2020

PHA UK have released the results of their survey – , an assessment of the impact of the pandemic on the pH community in the UK. You can see the report at this link:

‘Shielded Voices – Lived experiences during the early stages of the Covid-19 Pandemic’

Rare Diseases Ireland statement on Covid-19 and Cocooning

05 April 2020

Rare Diseases Ireland CEO Vicky McGrath has issued the following statement on coronavirus and the importance of cocooning:

“As the impact of coronavirus continues to take its toll on daily life in Ireland, we are continuing our work at RDI to ensure that the needs of the community are met. Yesterday we issued a statement on the importance of cocooning – this is a life-saving measure, not just for the individual involved but for the wider community too.  Never before have we all been so responsible for one-another’s health and well-being.

We are monitoring the reaction to coronavirus across Europe and globally to understand what measures are being implemented in other jurisdictions and to ensure that we are doing everything possible to protect the vulnerable in our community.

If you have any particular issues or concerns, please do let us know.”

The full text of the statement can be downloaded here or on the

Rare Disease Ireland website at this link

Rare Diseases Ireland statement regarding Coronavirus

27 March 2020

Rare Diseases Ireland’s CEO Vicky McGrath has issued a statement regarding Coronavirus (COVID-19) and the challenges for the rare disease community in Ireland. Download it at this link.

Advice on Corona Virus

19 March 2020

For advice on all issues related to Corona Virus please visit the HSE dedicated webpages at this link.

Webinar: Transition from Child to Adult Healthcare

24 February 2020

Short notice of a webinar organised by Actelion which will be held tomorrow Tuesday 25 February, 08:00 PST, 16:00 GMT, 17:00 CET The webinar is one hour long.

This episode will focus on the transition from child to adult healthcare for those living with a chronic disease, such as PH. Please note, this will not be a forum to discuss treatments and medical advice for individuals will not be provided as part of this activity.

Next steps

If you are interested in attending the webinar, please let the team at Four Health Communications know, by emailing

Actelion-PatientAdvocacy@fourhealthcommunications.com.

Please provide your preferred email address to be contacted on, if different to the one you use to reply to this email. The team will then share the calendar invitation with you, which will include details on how to join the webinar.

For those unable to attend the live discussion, a short podcast capturing the guest speaker presentation and a written digest of the key learnings will be developed and hosted on the PH Human website: www.ph-human.com/self-management.

Webinar: I am ready to travel but is it safe for me with pulmonary arterial hypertension (PAH)

05 February 2020

Actelion are organising a  Self-Management Webinar Series, which invites people living with PAH and patient group representatives to join. This episode will focus on the impact of PAH on a person’s ability to travel and will discuss the considerations and planning needs for traveling with PAH.

Please note, this will not be a forum to discuss treatments and medical advice for individuals will not be provided as part of this activity.

This educational and discursive online webinar will be held on Wednesday 26 February, 08:00 PST, 16:00 GMT, 17:00 CET. The webinar is one hour long. More information to follow regarding agenda points.

Next steps:
If you  are interested in attending the webinar, please let the team at Four Health Communications know, by emailing:

Actelion-PatientAdvocacy@fourhealthcommunications.com.

Please provide your preferred email address to be contacted on if it differs from the one you use to email in the first instance. The team will then share the calendar invitation with you, which will include details on how to join the webinar.

For those unable to attend the live discussion, a short podcast capturing the guest speaker presentation and a written digest of the key learnings will be developed and hosted on the PH Human website: www.ph-human.com/self-management. We will let you know when this is available online.

Rare Disease Day 2020

19 January 2020

Rare Disease Day 2020 is just over a month away now on the 29th February (Leap Day to emphasise ‘rareness’). There will be activities Europe wide and World wide to educate and spread awareness of the daunting and unique challenges that exist for patients who suffer from rare diseases such as Pulmonary Hypertension. We’ll provide more information as the day approaches but for now the image above is the signature poster for this year’s campaign.

IPPOSI 2019 Report on Electronic Health Records

19 January 2020

The outcome report from the 2019 IPPOSI (The Irish Platform for Patient Organisations, Science and Industry) conference on the topic of Electronic Health Records in Ireland can be downloaded here

This report is a record of the observations, concerns and recommendations raised by the 200+ patients, clinicians, researchers, regulators and government representatives who attended the IPPSOI conference on the 7th October, 2019.

It is clear from the report that Irish patients want to be able to rely on an Electronic Health Record (EHR) to provide a complete, accurate, real- time picture of their health and many ask ‘where are we now’ when it comes to the creation of a national EHR in Ireland?

Download the report to keep abreast of progress in this area in 2020.

PH Webinar

15 August 2019

INVITATION to join…

Webinar: Intimacy, family planning and PH – a conversation with my partner and my health care team?

Four Health Communications on behalf of Actelion are looking for members of our patient group interested in attending the first episode in this year’s self-management webinar series, which invites those living with PH to join – this is new for 2019! This episode will focus on best practice approaches to help people living with PH have conversations with their healthcare team about intimacy and family planning. Please note, this will not be a forum to discuss treatments and medical advice for individuals will not be provided as part of this activity.   

This educational and discursive online webinar will be held on Thursday 22 August, 08:00 PST, 16:00 BST, 17:00 CEST

The webinar is one hour long and will cover the following:

Next steps

If you are interested in attending the webinar, please let the team at Four Health Communications know, by emailing Actelion-PatientAdvocacy@fourhealthcommunications.com. Please provide your preferred email address to be contacted on, if different to the one you use to contact this email address. The team will then share the calendar invitation with you, which will include details on how to join the webinar. For those unable to attend the live discussion, a short podcast capturing the guest speaker presentation and a written digest of the key learnings will be developed and hosted on the PH Human website: https://www.ph-human.com/self-management. Four Health Communications will advise when this is available online.

2019 Rare Disease Day

22 February 2019

Next Thursday 28th February is 2019 Rare Disease day. The focus of the day is to highlight the plight and challenges of people who suffer from rare disease, By coming together to raise awareness the ‘few’ hope to become the ‘many’ in terms of the weight of advocacy that they can bring to bear, highlighting the deleterious impact of rare diseases like Pulmonary Hypertension. You can find out more at the https://www.phaware.global website

The rising cost of breathing

03 August 2018

Most of us take breathing for granted. Persons living with Pulmonary Hypertension (PH) do not.

In an effort to raise awareness of this devastating disease, Cobh Ramblers have agreed to wear PH T-shirts prior to their epic encounter against Dundalk on Monday evening, 6th August at 5.00 pm in St Coleman’s Park. The team also want to show their disappointment in successive governments failing to address the plight of patients who need assistance in breathing.

Many patients use oxygen to allow them breath. However running a single oxygen concentrator can incur an additional monthly expense of €30 to one’s electricity bill (€60 per billing period). Recent news of a hike in the cost of electricity is a dreadful worry to patients. It is immoral to think that no assistance is given to patients who incur this cost. Many patients are elderly whose only income is their State pension.

PH is a severe disease – it is debilitating and life-threatening. It inhibits one’s ability to perform even the simplest daily tasks (like walking up the stairs) and leaves patients tired and breathless. PH is much more common in young adults and is approximately twice as common in women as in men. With PH the arteries that carry blood from the heart to the lungs become narrowed, making it difficult for blood to flow through the vessels. Symptoms of pulmonary hypertension do not usually occur until the condition has progressed. The first symptom of PH is usually shortness of breath with everyday activities (e.g climbing the stairs) chest pain & fatigue. Persons who live with PH are challenged to breath on a daily basis. Because the condition is so rare (approx. 300 patients in Ireland), sufferers and their carers often feel isolated, lonely and frightened.

Unfortunately the condition is often misdiagnosed and mistaken for more common conditions such as asthma. If a patient is not diagnosed within 2.5 years – they will die. The Association is constantly trying to raise awareness of the condition, not only among members of the public but also among the medical profession.

The theme of PH Associations worldwide is ‘Get Breathless for PH’ we ask able bodied people to get breathless through sport and other activities in support of those who struggle to breathe on a daily basis.

We wish Cobh Ramblers the very best of luck and thank them for their help in highlighting this issue.

Further information available from Regina Prenderville, Pulmonary Hypertension Association – Ireland Tel: 087 637 6563  Email: pha@mater.ie 

Alternately you can use the contact form on this website

PHinding your hope

15 July 2018

The 2018 International Pulmonary Hypertension Conference & Scientific Sessions took place in Orlando, Florida USA on June 28th to July 1st. Titled ‘Phinding your hope’ it consisted of many breakout sessions and workshops. Regina Prenderville of PHA Ireland attended as one of the delegates and you can download  her comprehensive and informative notes of the conference at this link.

Support Group Meeting – Cork

13 July 2018

We’d like to remind everybody that our next Support Group Meeting is in the Silver Springs Hotel Cork on Monday next – 16th July at 12 noon in Harbour Suite 6 – looking forward to seeing all the attendees there.

Mariposa Journal Winter 2017/18

02 February 2018

PHA Europe’s Official Journal – Mariposa Journal is now available for download www.phaeurope.org/wp-content/uploads/Mariposa-winter-n.-19_web.pdf. The journal highlights the numerous projects and activities the organisation has successfully carried out in the course of the year to advance the cause of pulmonary hypertension (PH) patients in Europe and the accomplishments of the member associations, who have been incredibly active in their respective countries in raising the profile of the disease in many different ways.

PHA Ireland’s contribution can be viewed on Page 36 and keep an eye out for the pictures of Christine Coakley & Susan Finn Sheehan as they accepted 1st Prize for the best PH Awareness event for 2017 in the montage of images on page 10/11 ( https://www.pulmonaryhypertension.ie/ph-awareness-the-winner to read more about that story).

2018 Young People Patient Advocacy

24 January 2018

Via Pulmonary Hypertension Association Europe and the European Patients Forum (EPF) the annual opportunity to train our young people in patient advocacy comes around again.

Advocacy is about defending patients’ rights:
• Right to access treatment
• Right to have affordable medication
• Right to have good quality healthcare
• Right to equality and equity
The defense of these rights and achieving them is done with continuous efforts at national level and the relentless pressure at international level. The purpose is to prepare our young people to understand advocacy and increase our numbers.