Pulmonary Hypertension Unit

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 […]

 

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 […]

 

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.

 

Advice on Corona Virus

For advice on all issues related to Corona Virus please visit the HSE dedicated webpages at this link. https://www2.hse.ie/conditions/coronavirus/coronavirus.html  

 

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.

 

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 […]

 

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 […]

 

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

 

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 […]

 

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 […]

 

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 […]

 

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.

 

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 […]

 

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 […]

 

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 […]

 

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 […]

 

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 […]

 

‘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 […]

 

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 […]

 

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 […]