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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 […]