Pulmonary Hypertension Unit
-- 2018 to Present --
PHA UK Magazine emphasis
Over the years PHA Ireland has been supported by our colleagues across the water in PHA UK, the charity for UK pulmonary hypertension sufferers. We have shared forums in Ireland, the UK and Europe with the PHA UK team and where possible coordinated our efforts in support of PH awareness and patient support and foresee […]
Read Full Article8th Nov 23
PH consultants take to the pedals for patients
Update: This event is now complete and we want to congratulate Prof. Gaine, Dr. McCullagh and their UK colleagues on their endurance cycle battling fatigue and the elements to make it through to the finishing line at the Mater Hospital 3 days and 400Km on from their departure from Sheffield. We particularly want to offer […]
Read Full Article22nd Sep 23
PHA Ireland 2023 AGM Report
The AGM of the Pulmonary Hypertension Association – Ireland took place in Crowne Plaza Hotel, Blanchardstown on Saturday April 22nd. The event was very well attended with over 75 people present. The overall event was sponsored by Janssen Pharmaceuticals. Following introductory remarks by Martin Breen, the first session was a Q&A session between Prof. Sean […]
Read Full Article4th May 23
Pulmonary Hypertension Rehabilitation Programme
To coincide with Pulmonary Hypertension Awareness Week 2021, PHA Ireland are delighted to introduce a bespoke Pulmonary Hypertension (exercise) rehabilitation programme. Devised specifically for Pulmonary Hypertension patients by Ciara McCormack, an expert clinical exercise physiologist, it aims to provide PH patients with an opportunity to engage in some light exercises within their own home to […]
Read Full Article29th Oct 21
Patient Meeting Dublin June 29th
A further patient meeting has been confirmed for Dublin on Thursday June 29th. Location: Crowne Plaza Hotel, Blanchardstown Time: 1130:1330 Tea/Coffee wil be served on arrival. Please advise if you are planning to attend by email to – martinbreen@mater.ie.
Read Full Article13th Jun 23
Patient Meeting Cork June 15th
The next patient meeting is on Thursday June 15th in Clayton Silversprings Hotel, Cork. 11:30 to 13:30. Tea/coffee will be provided on arrival. Please let me know if you are going to attend by email to – martinbreen@mater.ie. There will also be a meeting In Dublin in the coming weeks and final details are being […]
Read Full Article6th Jun 23
World PH Day 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 […]
Read Full Article3rd May 23
Patients Support Group – Annual General Meeting 2023
Date: April 22nd, Saturday Location: Crowne Plaza Hotel, BlanchardstownTime: 10:15 – 15:00Registration is at 10:15 and there will be two breaks during the event, one for Tea/Coffee and one for lunch.The agenda is varied and will focus on issues pertinent to you.There is no cost for this event.Please bring a family member or supporter with […]
Read Full Article13th Apr 23
PHA Ireland featured in Mariposa Journal 2021
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 […]
Read Full Article18th Feb 22
National Pulmonary Hypertension Study Day
The National Pulmonary Hypertension study day for doctors in training took place in the Mater Hospital on the 16th December 2021. Thank you to our Chair Dr. McCullagh and our wonderful speakers Professor Kiely, from Sheffield University Hospital and our own Professor Gaine. Congratulations to the National Pulmonary Hypertension medal recipient Dr. Luke Forde (pictured […]
Read Full Article20th Dec 21
PHull Bull Tri – in action
This striking video captures the effort and endurance exerted in the PHull Bull Tri at Bull Island on Sunday 19th September to highlight the normal physical endurance that Pulmonary Hypertension so cruelly steals from those who suffer from this debilitating disease. Patrick Corkery, past sufferer from PH & an English Channel swimmer joined with the […]
Read Full Article24th Sep 21
PHull Bull triathlon – Video
Please watch this video by Ciara McCormack, the Exercise Specialist in the National Pulmonary Hypertension Unit explaining our upcoming Fundraiser event for PHA Ireland on Sunday 19th of September. You can find out more detail on our website here. If you wish to support us you can donate here:
Read Full Article1st Sep 21
PHull Bull triathlon
The Pulmonary Hypertension Association Ireland invite you and your family to take part in the PHull Bull triathlon on September 19th 2021. We plan to swim (10km), run (10km) & cycle (30km) around bull island on Sunday 19th of September 2021 to raise awareness of pulmonary hypertension (PH) and fundraise for the Pulmonary Hypertension Association […]
Read Full Article8th Aug 21
PHéileacán Newsletter Winter 2020
The Winter 2020 edition of PHéileacán is available here. Full of information for PH sufferers and their families the contents include: Progress with developments in PH Introducing the PAHTool Update on Research – Managing breathlessness during physical activity Looking forward to better times – Holidays and PH Learning to Live with COVID Fundraising events Life […]
Read Full Article23rd Dec 20
PHA UK Covid Survey Results
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’
Read Full Article14th Nov 20
World PH Day 5th May 2020
This year we will be celebrating World PH Day on the 5th May in the midst of the Covid-19 pandemic and as with all our normal lives this will curtail our ability to organise events to mark this important day. PHA Ireland has concentrated its major awareness and funding efforts to late summer, early Autumn […]
Read Full Article1st May 20
Rare Diseases Ireland statement on Covid-19 and Cocooning
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 […]
Read Full Article5th Apr 20
Rare Diseases Ireland statement regarding Coronavirus
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.
Read Full Article27th Mar 20
Advice on Corona Virus
For advice on all issues related to Corona Virus please visit the HSE dedicated webpages at this link.
Read Full Article19th Mar 20
Patient Support Group Meeting Cancelled
Please note that the Patient Support Group Meeting scheduled for 12 noon on Wednesday 25th March in the Kilmore Hotel, Cavan has been postponed because of the Corona Virus social distancing measures.
Read Full Article19th Mar 20
Webinar: Transition from Child to Adult Healthcare
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 […]
Read Full Article24th Feb 20
Mountjoy Staff Cheque Presentation
Staff from the Pulmonary Hyperptension Association were most grateful to accept a cheque for €9203.07 from Mr Eddie Mullins, Governor of Mountjoy Prison. This money was raised by the prison staff when they organised a static cycle outside the Mater Hospital last September. Everybody wore the ‘Get Breathless for PH’ t-shirts. It was a memorable […]
Read Full Article10th Feb 20
Support Group Meetings 2020 – February & March
Please take note of the following dates for our next support group meetings: Wednesday 19th February – Dublin Meeting will be held in the Executive Board Room of the Crowne Plaza, Blanchardstown at 12 noon Wednesday 25th March – Cavan Meeting will be held in the Breffni Suite, Kilmore Hotel, Cavan Town at 12 noon
Read Full Article7th Feb 20
Webinar: I am ready to travel but is it safe for me with pulmonary arterial hypertension (PAH)
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 […]
Read Full Article5th Feb 20
Rare Disease Day 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 […]
Read Full Article19th Jan 20
IPPOSI 2019 Report on Electronic Health Records
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 […]
Read Full Article19th Jan 20
My life with pulmonary arterial hypertension: a patient perspective
Pisana Ferrari and Hall Skåra have co-authored an article for the European Heart Journal Supplements focusing on the patient perspective of living with PAH. Titled ‘My life with pulmonary arterial hypertension: a patient perspective’ you can read it at this link.
Read Full Article7th Jan 20
Prison Service Unlock support for PH
We are delighted and truly grateful for this fantastic day today outside the Mater Hospital when the Mountjoy Prison Staff strained their sinews, hearts and lungs in a static bike marathon to ‘Get Breathless for PH’ and PHA Ireland specifically. They were supported by other volunteers from the Mater Hospital staff, the Lord Mayor of […]
Read Full Article10th Sep 19
Mountjoy Staff Fundraiser for PHA Ireland – Update
PHA Ireland have issued the following Press release in advance of Monday’s (9th September) static cycle fundraiser in aid of PHA Ireland. After Breath taking match – the Dubs do it all again for Charity Most of us take breathing for granted. Persons living with Pulmonary Hypertension (PH) do not – for them breathing is […]
Read Full Article6th Sep 19
Mountjoy Prison Staff support PH Awareness
The Irish Prison Service’s vision is ‘A safer community through excellence in a prison service built on respect for human dignity’ with an associated set of values including Teamwork, Integrity, Potential, Safety & Support. Next Monday 9th September, staff from Mountjoy Prison are bringing this set of professional vision and values to bear in order […]
Read Full Article3rd Sep 19
2019 AGM
PHA Ireland’s 2019 AGM will take place on Saturday, 7th September at the Crowne Plaza Hotel Blanchardstown, Dublin 15. As with previous years we are expecting a large turn out and the programme for the day includes a host of expert speakers with informative talks and interactive workshops. To register for the event you can […]
Read Full Article22nd Aug 19
PH Webinar
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 […]
Read Full Article15th Aug 19
‘My heart is getting very tired – I need a transplant’
Karen Doherty, who has Pulmonary Hypertension for the last 14 years, shares her story with the Irish Independent’s Health & Wellbeing issue on the 24th June 2019. In a moving and compelling article Karen describes the enormous impact the disease has on the sufferer and her family and speaks about her future. The article can […]
Read Full Article24th Jun 19
14 Years Living with Pulmonary Hypertension
Compelling, emotional and thought provoking interview by Karen Doherty of PHA Ireland with Matt Cooper on Today FM ‘The Last Word’ – 14 years living with Pulmonary Hypertension. Karen is also joined by Prof Sean Gaine, Head of the National Pulmonary Hypertension Unit as they take Matt through the real life issues and huge challenges […]
Read Full Article14th May 19
New Home Exercise Program for PH patients
A Meath research student has designed a ground-breaking home based exercise rehab programme for Pulmonary Hypertension (PH) patients which will be the first of its kind in Europe. Ciara McCormack, a Clinical Exercise Physiologist and PhD researcher in DCU who specialises in chronic illness exercise rehabilitation, has just returned home from Berlin where her protocol […]
Read Full Article16th Apr 19
PH-Human – a new resource on PH
Actelion’s patient support website www.PH-Human.com is now live! The website includes: • The PH Human eBook – a resource to help explain what PAH is • Careers and hobbies page – including inspirational stories and career advice • Self-management series – podcasts and reports on topics such as intimacy and health literacy You can visit […]
Read Full Article26th Feb 19
2019 Rare Disease Day
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 […]
Read Full Article22nd Feb 19
PHéileacán Newsletter 2019
2018 was another busy year for the Pulmonary Hypertension Association Ireland and the 2019 PHéileacán Newsletter provides in-depth coverage of the activities undertaken to raise awareness of PH and support the people who are so severely impacted by this rare disease. We soared to one of the highest points on earth when one of our […]
Read Full Article5th Feb 19
Irish Water Cheque Presentation
We’d like to say a very big thank you to the staff of Irish Water who, as we previously reported, managed to collect €750 for PHA Ireland in a 5K run recently. We are very grateful for their generosity of time and effort. Pictured above is Regina Prenderville of PHA Ireland (centre) with Ciaran O […]
Read Full Article3rd Dec 18
Team Phenomenal Hope UK & Ireland
We want to offer our congratulations and gratitude to all who participated in the 3 day endurance cycle from Sheffield to London marking PH Awareness week (22nd to 28th October). PHA Ireland was ably represented by Prof. Sean Gaine (pictured 5th from left and inset) who joined UK colleagues from different medical disciplines related to […]
Read Full Article28th Oct 18
Irish Water Staff 5K Run
We’d like to offer a massive thank you to the staff of Irish Water who took the opportunity of a 5K run in Fairview Park to support PH Awareness in a particularly timely fashion given it was PH Awareness Week (22nd to 28th October). You can see from the attached photos they addressed the run […]
Read Full Article28th Oct 18
Tallaght Athletics Club support PHA Ireland
On a beautiful afternoon in Dublin – the Tallaght Athletics Club ran a 5K race in support of one of our patients – Kathy Rooney. Kathy was delighted to be able to participate in part of the walk. The event was covered extensively by the local radio / print media. This was a real fun […]
Read Full Article26th Oct 18
Cup Finalists Cobh Ramblers support PHA Ireland
It takes character, hard work, skill and preparation to win a semi-final as underdogs and make it to the first senior national cup final in a club’s history. This is just what Cobh Ramblers FC achieved on Monday afternoon against Dundalk at St. Colman’s Park. Perhaps what displays the team’s character so vividly is that […]
Read Full Article9th Aug 18
The rising cost of breathing
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 […]
Read Full Article3rd Aug 18
PHinding your hope
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 […]
Read Full Article15th Jul 18
Support Group Meeting – Cork
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.
Read Full Article13th Jul 18
Great Day at 2018 Patient and Family Annual Meeting
We want to thank all our fabulous guest speakers, group facilitators and of course our very important patient and family participants that made the 2018 Patient & Family support meeting such a success last Saturday 28th April at Crowne Plaza Dublin – Blanchardstown. We hope everybody who attended found it engaging, informative and supportive. Please […]
Read Full Article7th May 18
2018 Annual Patient and Family Meeting
The 2018 Annual Patient and Family Meeting will take place on Saturday April 28th at the Crowne Plaza Hotel, Blanchardstown commencing at 930am. We have a wide range of expert speakers and interactive workshops for participants. Please download the full programme at this link to find out how to register and the details of the […]
Read Full Article11th Apr 18
PHéileacán – 2018 Newsletter
From Haulbowline to Patrick Street to Cobh Leisure Centre – Cork, from patient & family support meetings to the English Channel to Nice and Nuremberg, from the National Unit at the Mater Hospital to Dáil Éireann it’s been a PHenomenal year for PHA Ireland’s members and their supporters. If you don’t know what the Association has […]
Read Full Article17th Mar 18
PHA Ireland at Dáil Éireann
13th February 2018 was a very important and valuable day at Oireachtas Éireann, Ireland’s parliament, for PHA Ireland. A delegation of medical staff from the National Pulmonary Hypertension Unit, Mater Hospital, and members of PHA Ireland (Patients and Families members) attended and we are immensely grateful for all those who gave of their time to […]
Read Full Article18th Feb 18
Mariposa Journal Winter 2017/18
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 […]
Read Full Article2nd Feb 18
2018 Young People Patient Advocacy
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 […]
Read Full Article24th Jan 18
2018 Rare Disease Day
2018 Rare Disease Day is this 28th February. Rare Disease Day preparations are fully underway and we are one step closer with the release of the official poster for 2018 (image above). The poster reveals the social media campaign for 2018 #ShowYourRare where you can show your support for people living with a rare disease. Meet Yara, […]
Read Full Article22nd Jan 18
-- 2015 to 2017 --
Tweet Chat #YoungWithPAH
A special tweet chat using the hashtag #YoungWithPAH is happening today at 1730 Central European time – 1630 Irish time to focus on the issues and needs of young people with PAH. An expert panel of young people and clinicians will be participating.
Read Full Article27th Nov 17
Schoolmates reunite – Sonia O’Sullivan supports PH awareness
On Monday 6th November two schoolmates from the 1980’s reunited at Cobh Leisure Centre in Cork in the cause of PH awareness. One, Sonia O’Sullivan, among Ireland’s foremost sporting personalities – an Olympian and a World Champion who battled her way to the top of her discipline – and Christine Coakley who battles every day […]
Read Full Article9th Nov 17
Sonia O’Sullivan supports PH Awareness
Two girls who attended Cobh Community College in Co Cork in the 1980s will meet again on Monday 6th November in the Coral Leisure Centre in Cobh at 2pm. Both have had very different lives. One girl Sonia, became a world champion and an Olympian and the other girl Christine, was unfortunate to develop an […]
Read Full Article4th Nov 17
PH Awareness the winner as PHA Ireland comes 1st!
We’re delighted to report that at the PHA European AGM in Barcelona yesterday evening, PHA Ireland have won 1st prize for the best PH Awareness event for 2017. This of course was for the memorable and awe inspiring efforts of Irish Naval Service 40th Potential NCO’s Class who adopted us as their chosen charity for […]
Read Full Article20th Sep 17
Clinical Nurse Vacancy PH (CNM2/CNS)
There is a job opportunity in Eccles Research & Innovation Ltd (ERIL) based in CVRRE Directorate Mater Misericordiae University Hospital. 1 Year Fixed Term CNM2/CNS post in Pulmonary Hypertension full time, 39 hour week, Monday to Friday. Pulmonary Hypertension will require travailing to other hospitals for outpatient clinics with paid expenses. Informal enquiries for the […]
Read Full Article16th Aug 17
Gunboat Diplomacy in support of PH Awareness 2017
This week it’s time to bring the big gun(s) out in support of Pulmonary Hypertension Awareness and the Association. The 40th Potential NCOs’ class of the Irish Naval Service are preparing for the next phase of their career patrolling and protecting our shoreline, mounting search and rescue at home and abroad and many other humanitarian and operational […]
Read Full Article18th Jul 17
Irish Naval Service ‘ROW’ in behind PH Awareness 2017
The Irish Naval Service makes the news on a regular basis particularly with their humanitarian duties in the Mediterranean and their critical duties along the Irish coastline. This July we’re hoping that the ‘40th Potential NCOs Course’ will be making news on our behalf in support of Pulmonary Hypertension Awareness. This will be our primary […]
Read Full Article5th Jun 17
UCD lecture on Pulmonary Hypertension
As part of our continuing awareness programme – Dr Brian McCullagh presented a lecture to the 4th Year Medical Students in UCD today. We are most grateful to Karen Doherty of the Pulmonary Hypertension Association who attended the presentation and facilitated a question & answer session. Our sincere thanks to Karen for her fabulous contribution […]
Read Full Article15th May 17
Cork lecture on Pulmonary Hypertension
Please note the following lecture will be delivered to members of the Navy in the base in Haulbowline, Co Cork. Association members and guests are invited to this lecture and a visit to the Base will be conducted (numbers limited to 50 so please advise by email to pha@mater.ie if you intend going to Cork […]
Read Full Article15th May 17
World Pulmonary Hypertension Day 2017
In order to mark World PH Day 2017 the Pulmonary Hypertension Association Ireland issued the following press release: Pulmonary Hypertension – A devastating disease Most of us take breathing for granted. Persons living with Pulmonary Hypertension (PH) do not. PH is caused by many different conditions but can occasionally occur for no known reason with […]
Read Full Article4th May 17
Minister attends 2017 Patient & Family Meeting
We are very grateful to Finian McGrath, Minister for Disability issues, for attending our 2017 Patients & Families meeting. Minister McGrath tweeted after the event “Great morning with Prof. Sean Gaine and @pha_ireland.. Fantastic people who need support”. In response the Association stated “PH Association so grateful to Minister McGrath for his compassion, honesty & […]
Read Full Article4th May 17
Annual Patient & Family Meeting 2017
The 2017 Annual Patient & Family Meeting will be held in the Crowne Plaza Hotel this Saturday 22nd April. You can download the Programme for the day by clicking on this link.
Read Full Article18th Apr 17
#TimeMatters update
PHA Europe launched a campaign in late 2016 called #TimeMatters to raise awareness for the importance of the time element in the diagnosis and treatment of patients with PH. The aim is to encourage discussions and debate across the PH community in Europe, in particular through social media, on the different aspects of time, in order to […]
Read Full Article23rd Mar 17
PH Support Group Meeting
The next PH support Group Meeting will take place at 11am on Monday 13th March 2017 in the Crowne Plaza Hotel, Blanchardstown Centre, Blanchardstown D15. The meeting will take place in Meeting Room 1 on the 1st floor.
Read Full Article10th Mar 17
February 2017 Updates
PH Newsletter: In our last Newsletter we invited members to come up with a name for our PHA News. Since PH UK name their Newsletter Emphasis and PH Europe produce the Mariposa News (Mariposa is the Spanish for Butterfly) – we thought it would be appropriate to have a specific name for our Newsletter too. […]
Read Full Article24th Feb 17
Summer Training for Young Patient Advocates
FIRST Summer Training for Young Patient Advocates – Vienna – July 2017 We received the following information from PHA Europe about a unique and exciting opportunity for young people with an interest in pulmonary hypertension to learn about advocacy. ‘We have a unique opportunity to start preparing future PH fighters in an organised way. The […]
Read Full Article25th Jan 17
Dying to Breathe
This promotional video from PHA Europe seeks to highlight how Pulmonary Hypertension can affect anyone, at any time. This short first-person account of being recently diagnosed shows how difficult everyday life with PH can be and how important it is to raise awareness of the disease. View the full video at this link,
Read Full Article25th Jan 17
‘Time Matters in PH’ Campaign
Our colleague Hall Skaara in Norway wrote to advise of the following: “I have now posted the first Time Matters video on PHA Europe’s Facebook page. The video comes from Serbia and is an interview of 19 year old Andjela. (If you have not seen it yet, please visit PHA Europe’s Facebook page and have […]
Read Full Article15th Jan 17
Advocacy PHact or PHiction?
The following article highlights the role of advocacy in the US in bringing about awareness and funding for research into the treatment of Pulmonary Hypertension. Test Your Knowledge of PH Advocacy December 27, 2016 By Katie Kroner, PHA Senior Director, Advocacy and Treatment Access As the Pulmonary Hypertension Association (PHA) celebrates its 25th anniversary in […]
Read Full Article12th Jan 17
Dublin Support Group Meeting January 2017
The first Dublin Support Group Meeting of 2017 will be on Monday 23rd January at 11 am in the Crowne Plaza Hotel, Blanchardstown (this had initially been planned for 30th Jan).
Read Full Article10th Jan 17
PHA Ireland Newsletter 2016
The 2016 Newsletter can be downloaded at the link below. As the cost of professionally designed & printed booklets is very expensive, this time we are producing an in house version. The opinion of our readers is very important to us – so please let us know what you think.
Read Full Article15th Dec 16
BePhenomenal.com new website
November is Pulmonary Hypertension Awareness Month in the US and, in recognition, SteadyMed has announced the launch of its new website, BePHenomenal.com, dedicated to educating people with pulmonary hypertension (PH) so as to empower them to live the healthiest and most PHenomenal lives possible. BePHenomenal.com includes expert lifestyle information tailored for people with PH, such […]
Read Full Article4th Dec 16
Irish Examiner Article on Pulmonary Hypertension
In an article in the Irish Examiner, Lisa Salmon reports on the difficulties of diagnosing PH and the need for greater PH awareness. Lisa writes “IT’S easy to dismiss a condition no one really talks about as no big deal. But in the case of pulmonary hypertension (PH), it really is a big deal — […]
Read Full Article24th Nov 16
Inaugural Cork Support Group
The inaugural PH Cork Support Group meeting was held in the Clarion Hotel, Cork city today on Monday 17th Oct. It was a very lively, informative and enjoyable meeting. Members were very pleased to meet with other patients who also live in the South of Ireland. The Chairperson was reminded on many occasions that people […]
Read Full Article19th Oct 16
PH Europe Organ Donation and Transplant Campaign
There is an article on the PHA Europe event in the European Parliament on Organ Donation and Transplant on this week’s edition of the EPF (European Patients Forum) newsletter, in the Members Corner. The EPF is a very influential public health NGO, representing the voice of European patients. The item reads: “PHA Europe puts organ […]
Read Full Article29th Sep 16
Mariposa Journal Summer 2016
SUMMER 2016 – PHA EUROPE’S OFFICIAL JOURNAL: Pulmonary Hypertension Mariposa Journal is now available online at the link below and details all the events by country across Europe to highlight and celebrate World PH Day. It shows the diversity and creativity of the National PH organisations in their attempts to bring about Pulmonary Hypertension awareness […]
Read Full Article1st Sep 16
25 years of progress : changing the history of PH
The Pulmonary Hypertension Association, USA (PHA) held its 12th bi annual conference in the Omni Hotel, Dallas, Texas in June 2016. Over 1,500 patients, families and healthcare professionals attended for the largest gathering of the PH community in the world. Regina Prenderville, Project Manager, PHA Ireland attended this meeting and in a detailed account that […]
Read Full Article2nd Aug 16
PHA 2016 Conference Dallas
The 2016 PHA (America) conference took place in Dallas and patients & support group organisers from all over the world attended. The following video shows some of the emotional, heartwarming and inspirational moments that took place as everybody gathered to celebrate 25 years of progress in the PHA. The Conference included a large number of […]
Read Full Article12th Jul 16
Slovenia – World PH Day 2016
The following video shows the activities undertaken by our colleagues in Slovenia to raise awareness of Pulmonary Hypertension. As well as some very informative content it demonstrates a 6 minute walk test they devised to show non PH sufferers the burdens and challenges that Pulmonary Hypertension patients endure on a daily basis.
Read Full Article13th Jun 16
PHenomenal Faces behind PH
We have received the following information from PH Europe about a very interesting project originating from PHA America. We will provide further information about the social media campaign as it becomes available later in the year. SteadyMed Therapeutics and the Pulmonary Hypertension Association (America) are partnering together to showcase the brave and dynamic women and […]
Read Full Article3rd Jun 16
Look How Far We Have Come
Professor Sean Gaine and many other experts across the world have contributed to this video, developed by Actelion, charting how far understanding, treatment and support of Pulmonary Hypertension and PH patients has come since the early 1990’s. A lot done and a lot to be proud of, a lot more to do. This fabulous video […]
Read Full Article12th May 16
The Sun Shines on PH Awareness 2016
The weather provided the perfect support to our Viking Splash Tour of Dublin to raise awareness of Pulmonary Hypertension for World PH Day 2016. PH awareness was the clear winner when we got off to a great start by being seen off by 4 winners! Cian O’ Sullivan, Jonny Cooper, John Small and Michael Fitzsimons […]
Read Full Article9th May 16
The Dubs support PH Awareness for World PH Day
As we set off on the Viking Splash tour in Dublin next Sunday 8th May to bring awareness of Pulmonary Hypertension on World PH Day, we’re delighted that we’ll be supported by members of the Dublin Senior GAA Football team. The players, as a matter of course, get breathless in their successful pursuit of All […]
Read Full Article1st May 16
Great attendance at 2016 Patient Conference
Thanks to all who attended the annual Pulmonary Hypertension meeting for patients & family members at the Crowne Plaza Hotel Dublin on Saturday 16th April. The attendance of 107 was the best we’ve ever had. Great indication of the positive growth of our organisation. A very sincere thank you to the speakers, workshop facilitators and […]
Read Full Article18th Apr 16
2016 Patient Meeting Programme
The 2016 Patient Meeting is taking place on Saturday 16th April, 2016 at the Crowne Plaza Hotel, Blanchardstown, Dublin 15. We already have many PHA Ireland patients and family members signing up to attend what promises to be a highly informative and interactive day with a fabulous range of expert speakers. We highly recommend you attend […]
Read Full Article4th Apr 16
Race Night
A race night is being organised by one of our members Sally-Ann Breen and her husband Martin on Thursday March 10th in St Mary’s Rugby Club, Templeogue at 7.45 pm. They have secured sponsorship from Paddy Power for the night and all are welcome to attend and do bring your PH T shirt along (if […]
Read Full Article7th Mar 16
2016 Patient / Family Meeting
A date for your diary: The 2016 Patient / family meeting will be held on Saturday, 16 April 2016 in Crowne Plaza Hotel, Blanchardstown. The day’s programme will be advised soon.
Read Full Article29th Feb 16
Inaugural Midlands Support Group Meeting
PHA ireland is having its first Midlands Support Group meeting in Mullingar on 7 March in Bloomfield House Hotel at 11 am. We’re looking forward to seeing all those who can attend.
Read Full Article29th Feb 16
Collie’s Chop for Charity
Kathleen Darker’s son Colin, together with his girlfriend, Avril Burbridge organised a fundraiser for Pulmonary Hypertension on Saturday, 6 February in Slattery’s in Rathmines. The event – aptly named ‘Collies Chop for Charity’ was an outstanding success. Colin had long, waist length, raven dreadlocks and prior to the night, family members, friends, neighbours and colleagues most generously sponsored the […]
Read Full Article12th Feb 16
Patient Support Group Meetings
A private room has been reserved in the Hibernian Suite of the Business Centre of the Red Cow Moran Hotel for the following dates: 9 December, 2015 20 January 2016 17 February 2016 16 March 2016 All meeting will be held on Wednesdays at 11 am Patients & family members/ friends welcome to attend
Read Full Article7th Dec 15
Introducing the PH Library
The website www.ourphlibrary.com has been developed by leading patient associations PHA Europe and PHA US, to provide information and a library of high quality resources developed by patient groups for anyone who has been diagnosed with Pulmonary Arterial Hypertension (PAH) as well as their families and carers. It also aims to provide an index of […]
Read Full Article15th Nov 15
Patient Support Group Meeting 12th November 2015
The next patient support group meeting will be held on Thursday 12 November at 7 pm in the Faith Centre on St Alphonsus Road. This is in the grounds of the Monastery – you will see the high walls and a sign for the Ruah Retreat Centre on the gate. This venue is very close […]
Read Full Article9th Nov 15
Knightsbrook Health Club Fundraiser
The Staff at Knightsbrook Health Club, Trim recently held a fundraiser for the Irish Cancer Society and the Pulmonary Hypertension Unit in the Mater Hospital Dublin raising €1230 which was divided equally between both charities. Pictured from left are staff members: Teresa Melia, Brian Lennon, Chloe Duignan, Philip Dorian, Ania Filipiak and Grace Dennison.
Read Full Article6th Oct 15
Prof Sean Gaine receives international award
In June this year Prof Sean Gaine, consultant Respiratory Physician travelled to the United States to receive the Samuel P. Asper Award for Achievement in Advancing International Medical Education from the Johns Hopkins Medical and Surgical Association. The award was presented by Dr Paul Rothman the Dean of the Johns Hopkins School of Medicine and […]
Read Full Article1st Jul 15
Minister of Health supports PH awareness
Minister of Health Leo Varadkar attended the official opening of the National Rare Diseases Unit in the Mater Hospital on the 4th June and took the time to give the thumbs up for Pulmonary Hypertension awareness. We appreciate his help and support in spreading the word!
Read Full Article21st Jun 15
Register for Patient and Family Meeting 2015
We’d just like to remind everybody who is planning to attend the Patient and Family meeting 2015 this Saturday 9th May at the Gresham Hotel, Dublin that it is very important to register for the event (there is no charge to attend). Please do so by contacting Regina Prenderville – Tel: +353 -1 -854 -5172 or […]
Read Full Article6th May 15
Riverdance Get Breathless to support PH Awareness
Today on World PH Day 5th May, the world renowned dance troupe Riverdance stepped out to support PH awareness and PHA Ireland. As they prepare for their run in Dublin’s Gaiety Theatre this summer, members of Riverdance struck quite the stylish pose in our PHA Ireland t-shirts and created perhaps the most energetic spectacle of […]
Read Full Article5th May 15
World PH Day 2015
Only five days to go to MAY 5, WORLD PULMONARY HYPERTENSION DAY Patient associations around the world are busy organising their celebrations for this important event which aims to raise awareness of pulmonary hypertension (PH), a little known and life threatening lung and heart condition. More awareness can lead to earlier diagnosis and initiation of […]
Read Full Article29th Apr 15
Patient & Family Meeting 2015 Programme
The 2015 Patient and Family meeting takes place in the Gresham Hotel, Dublin on Saturday May 9th 2015. Download the programme here to see the expert speakers presenting and the workshop sessions that have been organised for the Pulmonary Hypertension patients and their family and friends. There is no charge for attending the meeting however […]
Read Full Article29th Apr 15
Leinster Group Meeting for PH Patients and Families
The first meeting of this group was held on Wednesday 15 April at 7.30 pm. There was great enthusiasm to get a regular support group up and running. The next meeting is scheduled for 27th May 7.30 pm in the Red Cow Inn. Further information from: Regina Prenderville, Tel: 01 854 5172 or 087 637 6563 : Alternately […]
Read Full Article16th Apr 15
Upcoming Events
Patient and Family Meeting 2015 This year’s meeting will be held in the Gresham Hotel, O Connell St., Dublin on Saturday, 9 May at 10.00 am – Registration is from 9.30 am. We have reserved the O’Connell and the Trinity Suites for our meeting. The area is spacious with easy access to bathroom facilities etc. The […]
Read Full Article10th Apr 15
All Ireland Pulmonary Hypertension Meeting 2015 – Register
The All Ireland Pulmonary Hypertension meeting 2015 for medical professionals will take place in Belfast on Friday 27th February 2015 at the Hilton Hotel Belfast. Hosted by Prof. Sean Gaine, Consultant Respiratory Physician, Mater Misericordiae University Hospital and Dr Carol Wilson, Consultant Cardiologist, Belfast Health & Social Care Trust, the event includes presentations from 6 leading expert guest speakers from […]
Read Full Article23rd Jan 15
-- 2012 to 2014 --
All Ireland Pulmonary Hypertension Meeting 2015 – Abstracts
The All Ireland Pulmonary Hypertension day taking place on Friday the 27th February 2015 in Belfast (details in image above) includes a trainee award for best presentation. To that end we are calling for abstracts and you can download the document here for the correct template. Please ensure that you fill in all the details in […]
Read Full Article16th Dec 14
A date for your Diary – All Ireland Pulmonary Hypertension Meeting 2015
As you can see from the flyer above our 2015 All Ireland Pulmonary Hypertension meeting will be taking place on Friday 27th February 2015 in Belfast. In the first instance we are calling for abstracts and a form will be available on the 15th December onwards for download from this website for those wishing to make […]
Read Full Article27th Nov 14
Daniel’s life with Pulmonary Hypertension
We received the following message from our colleagues Iveta & Peter in Slovakia. We think you might find the video interesting and inspiring. I am proud to let you know that the movie “Daniel’s life with PH”, which we recorded last year, won another award. First part of the movie called “Lungs, which do not work” […]
Read Full Article11th Nov 14
Kissing Chain Videos
You’ve seen the pictures, read the press coverage now it’s time to see the videos! We narrowly missed our record attempt but the presence of (Irish Deputy Prime-minister) Tánaiste Joan Burton with Professor Sean Gaine of the National Pulmonary Hypertension Unit brought some great press coverage and interviews with the media. Watch Prof. Gaine give an […]
Read Full Article2nd Nov 14
Read All About It – Kissing Chain Record Attempt makes the Press
One of our main aims for the Kissing Chain Record attempt was to attract as much publicity and media coverage as possible to promote Pulmonary Hypertension awareness. The great turnout from our patients, their families and supporters and many other willing volunteers bolstered by the presence of (Irish Deputy Prime minister) Tánaiste Joan Burton meant a […]
Read Full Article19th Oct 14
Copenhagen Ironman 2014
It takes an Iron Will to deal with Pulmonary Hypertension so there was no more fitting collaboration than PH Europe and the August Copenhagen 2014 Ironman event to raise awareness of Pulmonary Hypertension and educate the public on how everyday with Pulmonary Hypertension is like an Ironman challenge for PH patients. Download this article by […]
Read Full Article10th Sep 14
Tour d’Irlande East – an experience to remember!
Saturday 24 May was a damp, dull morning – but the spirits of our brave cyclists were not dampened by such trivialities as the weather. These guys were on a mission – to visit their colleagues in the new Ireland East Hospital Group while raising much needed funds to complete the 3rd Catheterisation Laboratory in […]
Read Full Article12th Aug 14
PHA Europe Summer Newsletter
PHA Europe have published their Summer 2014 Mariposa Journal and you can download a copy of it here to see the activities of PH organisations across Europe.
Read Full Article11th Aug 14
Kissing our way into the Record Books
Pulmonary Hypertension Awareness Day – 28 September 2014 at 1.00 pm Guinness World Records have accepted our challenge to break the Longest Kissing Chain – (current record is 351). We have been trying to organise this event for some weeks and had hoped to do this as part of World PH Day events on 5 […]
Read Full Article31st Jul 14
Tour d’Irlande East
Irish medical consultants take “maters” into their own hands and hit the road to raise funds for urgently needed hospital equipment. “On your bike! Let’s do ‘rounds; in our new Ireland East Hospital group!’. A new Cath Laboratory is urgently needed say the Heart and Lung teams at the Mater Hospital. So they are taking […]
Read Full Article21st May 14
Patient & Family Meeting 2014
The Pulmonary Hypertension Association’s Annual Patient and Carer Meeting for 2014 was held in the Gibson Hotel on Saturday the 10th May. As the photographs below testify the event was very well supported and considered very successful by all those attending. The programme for the day involved presentations by Ms. Regina Prenderville of PHA Ireland, […]
Read Full Article15th May 14
Time to Talk
PHA Europe have updated their website to make the findings from the Patient and Carer survey (conducted at the end of 2011 across five European countries) more accessible to members and created a new “Time to Talk” section to host a range of upcoming materials to support PHA Europe members and patients and carers. By […]
Read Full Article15th May 14
2014 Patient and Family Meeting Programme
The 2014 annual Patient and Family Meeting will take place on the 10th May at the Gibson Hotel, Point Village, Dublin. Download the programme for the day here.
Read Full Article9th May 14
Support Group Meetings
We wish to encourage the development of support groups around the country. However to ensure the success of this, we need the help of those who have a connection or interest in Pulmonary Hypertension. Through the Pulmonary Hypertension Association – Ireland, we would be very happy to offer any organisational assistance that may be necessary […]
Read Full Article2nd Apr 14
PHA Ireland Spring 2014 Newsletter
The 2014 Pulmonary Hypertension Association Ireland Newsletter has just been published. Full of informative content it covers areas such as Medical Updates, the work of the Clinical Nurse Specialists, Research & Clinical trials, the 2013 Get Breathless for PH campaign and other PHA Ireland related material. We hope you enjoy it and find it informative. […]
Read Full Article21st Mar 14
2014 Patient and Family Members Annual Meeting
The annual meeting for patients & family members will be held in the Gibson Hotel, Point Village, Dublin on Saturday 10th May 2014. The programme and further information will be circulated to members shortly.
Read Full Article9th Jan 14
European Report puts Ireland at bottom of league for Lung Health
Give Lungs a Sporting Chance Urges Lung Health Alliance Monday, 4th November, 2013: With 1 in 7 people in Ireland having an undiagnosed lung condition and Ireland having the third highest death rate from lung disease in Europe, causing 1 in 5 deaths, it is vital that people know how to maximise their lung health […]
Read Full Article5th Nov 13
Caughoo Challenge
Joanna Cornwall, Aidan Hayes, Michael Hayes and Caroline O’Connell took on the Caughoo challenge on 17th of August, raising money for the Pulmonary Hypertension Association. This was a 10km run from Sutton which brought runners to the top of the hill of Howth with beautiful views on Dublin bay. Dr Caroline O Connell (second from […]
Read Full Article7th Oct 13
Inis Oírr Micro Triathlon
The residents of Inis Oirr organised a micro triathlon to support our Get Breathless for Pulmonary Hypertension Campaign. We’d like to offer our thanks to Paddy Crowe and all who helped organise and particpate in the event and for their generous contributions. The pictures illustrate that it seems to have been a great combination of […]
Read Full Article4th Sep 13
Fundraising in Roscommon for Get Breathless Campaign
Pictured is Charlie Finneran and his wife Bridie presenting a cheque to Professor Sean Gaine, Head of the National Pulmonary Hypertension Unit and Regina Prenderville of PHA Ireland. A huge thanks to Charlie and Bridie from Roscommon who raised a fantastic €2,430 for Pulmonary Hypertension. They raised the funds through a card game which was […]
Read Full Article12th Aug 13
Getting Breathless against a Breath Taking Backdrop
The Templenoe Regatta was held on Valentia Island, Co Kerry on Sunday 14 July. This was a spectacular event, held in magnificent surroundings. All races are a true test of strength, endurance and team work and are a great attraction for crowds of supporters and spectators. These pictures were taken of Leo Houlihan’s crew training […]
Read Full Article29th Jul 13
They went to Hell and Back!
And now we have the documentary evidence! Our eight brave volunteers did indeed go To Hell and Back last saturday June 15th. Taking on the 10K challenge at Kilruddy Estate in Wicklow on our behalf were Niamh Prendeville, Ron Doyle, Ciara McDonnell, Elaine McDonnell, Stephen Fogarthy, Conor McIntyre, Courtney Flynn and Kate Faughnan and (being […]
Read Full Article18th Jun 13
PH support from the Mini Marathon Ladies
Monday June 3rd saw a huge number (close to forty thousand) of ladies take to the streets of Dublin to partake in the Flora 2013 Women’s Mini Marathon. Taking on the 10K course and the soaring (for Dublin!) temperatures, supporting their charities of choice was the prime motivation for many paticipants and we were lucky enough to […]
Read Full Article7th Jun 13
Afternoon Tea in Cork
Susan Sheehan and her family and friends organised an afternoon tea on 5 May – World PH Day. Susan was overwhelmed by everyone’s generosity – they raised a total of €3,250 for the Pulmonary Hypertension Association. Her children and their friends were very busy on the day and Susan said they were an enormous help to […]
Read Full Article7th Jun 13
To Hell and Back for PH campaign
We have some very brave volunteers prepared to go to ‘Hell and Back’ to support our Get Breathless for PH campaign on this coming June 15th. Ten young people (so far) will be undertaking what might be considered Ireland’s toughest 10k run, jump, climb, wade etc. course in order to support PHA Ireland’s 2013 PHA awareness campaign. Take a look at what […]
Read Full Article30th May 13
Riverdance Ladies support ‘Get Breathless’ Campaign
Congratulations to Maeve O’ Donnell (Donohoe) who got married on Saturday – and what did she do the day after her big day? She took time out with her bridesmaids and friends to show their support for the ‘Get Breathless for PH’ campaign. Of course not only are Maeve and her friends part of the bridal party but also […]
Read Full Article8th May 13
Many patient journeys – one voice – 2013 Patient Symposium
The recent ‘Pulmonary Hypertension Symposium for Patients and their Families’ event’ in Dublin ahead of World Pulmonary Hypertension (HP) Day saw experts in their fields address a packed meeting on how patient groups can use their collective voice to inform health policies and improve the lot of the PH patient overall. Pictured above are Mr. […]
Read Full Article8th May 13
Irish Ladies Rugby Team ‘Get Breathless’
The victorious Irish Ladies Rugby Team (winners of the Grand Slam & 6 Nations Championship) were happy to get breathless when they launched the ‘Get Breathless for Pulmonary Hypertension’ campaign at the Old Wesley training grounds. Ailis Egan, Nora Stapleton, Fiona Coghlan, Shannon Houston and Jenny Murphy of the 2013 Ladies Rugby Grand Slam team […]
Read Full Article1st May 13
Impressive turn out at the PHA 2013 Patient Symposium
There was a large turn out at The Grand Hotel, Malahide on the 27th April with nearly a hundred delegates from all over Ireland attending the 2013 Pulmonary Hypertension Association Ireland Symposium for patients, families and friends. An impressive set of speakers made for very informative sessions and an opportunity for the delegates to question the expert […]
Read Full Article1st May 13
2013 Pulmonary Hypertension Symposium
We will be gathering at the Grand Hotel Malahide on the 27th April for the 2013 PULMONARY HYPERTENSION SYMPOSIUM for patients and their families. We have an excellent line up of speakers to both present and answer the attendees’ questions and concerns. Please see the programme for the symposium below or alternately download a PDF version here Programme […]
Read Full Article16th Apr 13
Advances in Pulmonary Hypertension
In an article in the Irish Medical Times Priscilla Lynch looks at advancements in pulmonary hypertension treatement and care including an in depth interview with Professor Sean Gaine. Read a copy of the article by downloading here or in the Irish Medical Times online here
Read Full Article12th Nov 12
Running for Pulmonary Hypertension
Please sponsor Lynn Fox, the latest member to the PH nursing team. Lynn is running the Dublin city marathon on the 29th October 2012 and raising much needed funds for the PH Unit at the Mater Hospital. Sponsorship cards are available by contacting the unit on 01-8034420, or by post.Your support is greatly appreciated and we will keep you up […]
Read Full Article31st Aug 12
Out Patient Clinic
The Pulmonary Hypertension out patient clinic will now take place in the new extension of the main hospital. It can be accessed from the North Circular Road and the clinic is located on Level 1, Clinic 1. We look forward to seeing you at this wonderful new state-of-the-art facility. The PH Unit remains at its current location, 56 Eccles […]
Read Full Article9th Jul 12
