Pulmonary Hypertension Unit

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 […]

 

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 […]

 

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 […]

 

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 […]

 

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 […]

 

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 […]

 

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 […]

 

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 […]

 

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 […]

 

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 […]

 

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.

 

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 […]

 

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 […]

 

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 […]

 

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 […]

 

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 […]

 

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 […]

 

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, […]

 

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.

 

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 […]