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 […]
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 […]
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 […]
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 […]
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 […]
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 & […]
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.
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 […]
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.
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. […]
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 […]
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,
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 […]
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 […]
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).
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.
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 […]
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 — […]
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 […]
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 […]
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 […]
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 […]
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 […]
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.
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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.
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.
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 […]
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
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 […]
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 […]
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.
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 […]
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!
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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” […]
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 […]
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 […]
PHA Europe are members of the EURORDIS Committee in charge of organizing the “European Year of Rare Diseaseas 2019”. It is a great honour to be part of this but we need you help to make it happen! Each year since 1983, the EU has chosen a specific topic for the European Year in order […]
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 […]
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 […]
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.
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 […]
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 […]
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, […]
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 […]
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.
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 […]
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. […]
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.
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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. […]
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 […]
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 […]
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 […]
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
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 […]
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 […]