2018 Rare Disease Day

22 January 2018

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.

Tweet Chat #YoungWithPAH

27 November 2017

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.

Clinical Nurse Vacancy PH (CNM2/CNS)

16 August 2017

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 above position to Ms Nina Sheridan, Directorate Nurse Manager on 01 803 4744 or email nsheridan@mater.ie

HOW TO APPLY
Please e-mail your Curriculum Vitae for the above position with the names, e-mail addresses and telephone numbers of 2 referees to jobs@eril.ie

A job description for the above position is available on request from jobs@eril.ie. Applications to arrive by Friday 18th of August 2017

For more details of the vacancy please visit http://www.mater.ie/healthcare-professionals/job-opportunities/

Irish Naval Service ‘ROW’ in behind PH Awareness 2017

05 June 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 2017 annual awareness / fundraising event. The class is currently planning the following activities:

On Wednesday 19th July at the Naval Base, the class will be holding a Coffee Morning in aid of PH awareness.
On Saturday 22nd July on Patrick Street , Cork City from 9am – 6pm, they will hold a sponsored Rowathon and we’re hoping for some significant exposure from this event.
This area of Patrick Street has a footfall of 40/50,000 of a Saturday and they will be broadcasting this event via Facebook and other social media sites. The Irish Navy Facebook page alone has over 30,000 followers. They are also hoping to involve the local radio stations Cork96FM and REDFM.
The plan for the Rowathon is to represent the Navy’s role in the Mediterranean Rescue Mission by rowing the distance taken to travel from Tripoli (where most of the refugees leave from) to Polermo (where they are brought ashore after being picked up by the Irish Naval Service). This is a total distance of 450 kilometres, with each of the 26 Potential NCOs rowing approx. 17 kilometres each over the 9 hours, using 4 static rowing machines.They will wear both Navy uniforms as well as our Pulmonary Hypertension awareness t-shirts in order to attract as much attention as possible.

They have also very kindly invited us to attend the Passing Out Parade for this Potential NCOs Class on the Naval Base due in August, the date to be confirmed.

We’re extremely grateful to these fine Naval Service Personnel for their planned efforts on our behalf. All are welcome to attend and participate in the events. We’ll continue to update you on any changes or variations to the schedule in the run up to July.

Annual Patient & Family Meeting 2017

18 April 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.

#TimeMatters update

23 March 2017

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 hopefully raise the profile of the disease further!

New content (blogs, videos etc) is continually being added to the campaign on both the PHA Europe website  and on the PHA Europe Facebook page.

We strongly recommend you visit the two links above and comment and share the content across your social media activity to support PH awareness and this campaign in particular.

PH Support Group Meeting

10 March 2017

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.

February 2017 Updates

24 February 2017

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. The winning suggestion was made by Sally Ann Breen and our future Newsletters will be called ………PHéileacán – Féileacán is the Irish word for Butterfly. (Congratulations to Sally Ann who is the winner of a €50 voucher)

The butterfly symbolically represents the lungs and it is inserted inside a heart to signify that the disease affects both these organs.

PH Logo:

Please note we are not changing our PH Logo. Our logo symbolises the four chambers of the Heart and the shape of the Harp symbolises that we are the Irish Association.

Support Group Meeting:

A support group meeting was held in the Clayton Hotel Cork on Monday 20th February. While attendance was disappointing – it was a very informative and pleasant meeting.

Summer Training for Young Patient Advocates

25 January 2017

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 European Patients’ Forum will hold the first Summer Training for Young Patient Advocates.  If you can identify young people aged 18-30 years old who have an interest in pulmonary hypertension, you have the possibility to give them the chance to know what advocacy is, how to identify the needs of the community and how to identify and address the right stakeholders to make things happen’

We’ve been invited  to present candidates to participate in the leadership programme and  encourage our young members to apply for this Summer training.  PLEASE NOTE – the deadline for applications is 3rd February 2017.

Applications should be submitted to:

Regina Prenderville
Project Manager
Pulmonary Hypertension Association – Ireland
Centre for Lung Health
Mater Misericordiae University Hospital
56, Eccles Street, Dublin 7

Tel: 00 353 1 854 5172 or 00 353 87 637 6563
email: pha@mater.ie

Dying to Breathe

25 January 2017

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,

‘Time Matters in PH’ Campaign

15 January 2017

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 a look.) I would encourage all associations to share the video on their Facebook page in order to create maximum awareness of TimeMatters and PH. Please also encourage the members to comment the video as one of our aims with the TimeMatters campaign is to both create awareness and involvement.
Two days later, I posted the picture/quote of Andjela on our Facebook page with a link to her story on our web page. So Andjela’s story is now both out in a video format and a blog format.
In the week and months to come, more stories will be posted from both Serbia plus the three other participating associations (Portugal, Austria and Israel). Please help us to keep the campaign active and alive! ”

The link Hall refers to is http://www.phaeurope.org/2017/01/andjela-tells-pah-story/

Advocacy PHact or PHiction?

12 January 2017

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 2016, we reflect on how far we have come in our advocacy efforts. Thanks to a community of thousands of PH advocates working together, we are raising awareness on Capitol Hill and furthering our mission every day. Test your knowledge of PH advocacy.

1. Who Introduced the first PH bill?
Rep. Kevin Brady (R-TX) introduced the first PH bill in 2000. Congressman Brady is now the Chairman of the House Ways and Means Committee and remains one of our congressional champions along with Rep. Lois Capps (D-CA) and Sen. Bob Casey (D-PA).

2. What do the 9:30 Club and the Hungarian Embassy have to do with PH?
Another early champion of PH legislation in Congress was former Rep. Tom Lantos. Congressman Lantos, a Hungarian-American, was the only Holocaust survivor to serve in Congress and was close friends with the Hungarian Ambassador to the U.S. at the time. Lantos’ granddaughter, Charity Sunshine, was also building a career as an opera singer, despite a recent diagnosis of PH. In 2006, the Hungarian Ambassador suggested that his rock band perform a concert to raise awareness and funds for PH. The result was “Rockin’ for a Cure,” held at Washington, D.C.’s 9:30 Club with special guest Charity Sunshine.

3. True or False? PH advocacy has generated more than $25 million in PH research funding.
TRUE! And counting. The PH Research and Diagnosis Act has evolved over time based on the success of the PH community’s advocacy efforts. Since 2005, this bill has driven funding by the National Heart, Lung and Blood Institute (NHLBI) with support from the PH community driving a recent announcement of an even greater investment in PH research.

4. What federal agency met with the PH community in 2012?
In 2012, the Food and Drug Administration (FDA) announced that it would hold a series of meetings to hear directly from patients about their priorities and ideas about drug safety and effectiveness. Hundreds of organizations applied, and the FDA chose 16 disease communities—including pulmonary arterial hypertension.

5. True or False? Congress wants the Centers for Disease Control and Prevention (CDC) to raise awareness of PH.
TRUE! When Congress passed the 2016 funding package for the federal government, it included binding language indicating that the National Institutes of Health should prioritize PH research. Additional language directs the CDC to increase early diagnosis and public awareness of PH and to report back in a year on what has been accomplished.

6. Does PHA work on any legislative issues besides the PH bill?
YES! While the PH Research and Diagnosis Act is the cornerstone of PHA’s legislative agenda, PHA knows there are other issues—such as treatment access—that impact the PH community every day. We’re working with partner organizations to advance a bill that would limit co-insurance costs for PH medication and another that would protect the ability of non-profit organizations to provide insurance premium assistance.

Adapted from PHA’s Pathlight Magazine, a publication of the Pulmonary Hypertension Association – Summer 2016 // Volume 25 No. 3

PHA Ireland Newsletter 2016

15 December 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.

BePhenomenal.com new website

04 December 2016

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 as exercise tips, healthy recipes contributed by patients and experts familiar with the disease, and testimonials from people living with PH on their experiences and the techniques they use to manage the condition. Visitors to BePHenomenal.com can register to receive updates as new information is added to the site.

The website can be found at this link  https://www.bephenomenal.com/#!/

The above content is an excerpt from Pulmonary Hypertension News, an online publication by the Pulmonary Hypertension Association (America)  and contains many interesting and informative articles and blogs for PH patients and carers and associated medical professionals. You can find PHA News at this link
 https://pulmonaryhypertensionnews.com/

Irish Examiner Article on Pulmonary Hypertension

24 November 2016

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 — so big, in fact, that if left untreated, the condition can kill within two years.”

Read the full article on the Irish Examiner’s website at this link.

Inaugural Cork Support Group

19 October 2016

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 from Cork speak more than those from other parts of the country and it was really good to meet with many ‘characters’ who gave all in attendance a good laugh!! Email addresses & mobile phone numbers were exchanged. Date of next meeting will be announced when minutes are circulated within next few days. Thanks to all those who attended – together we will continue to raise awareness of PH while we make new friends along the way. PLEASE NOTE: Date of next Dublin Support Group Meeting – Monday 7th Nov in the Crowne Plaza Hotel, Blanchardstown at 11 am.

PH Europe Organ Donation and Transplant Campaign

29 September 2016

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 donation and transplantation in the EU agenda.

PHA Europe, the European pulmonary hypertension association, is running a campaign to raise awareness about the importance of organ donation and transplantation to save lives across the EU. In this regard, on 18 October 2016, a multi-stakeholder cross-condition meeting will be held in the European Parliament to discuss how to improve organ donation and transplantation in Europe.

Do you want to know how to support the campaign or check the agenda of the event? Click on the link below!

Let’s #CALL4Transplant”

You can find the agenda of the meeting and suggestions on how to support the campaign in other ways at this link:

http://www.phaeurope.org/projects-activities/advocacy/call-to-action-on-organ-donation-and-transplantation/

Mariposa Journal Summer 2016

01 September 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 and of course we’re particularly proud of our own efforts here in Ireland (page 16!)

http://www.phaeurope.org/projects-acti…/mariposa-newsletter/

25 years of progress : changing the history of PH

02 August 2016

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 you can download here describes the varied, informative and inspirational events that made up the three day conference, Regina is pictured with Sally Anne Breen PHA Ireland and Rino Aldrighetti, outgoing President and CEO of PHA America.

PHA 2016 Conference Dallas

12 July 2016

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 International Leaders in PHA from around the world.

PHA Ireland was represented by Regina Prenderville and Sally Anne Breen pictured below with Rino Aldrighetti, outgoing President and CEO of PHA (America).

To add to the sense of occasion the Omni Hotel Dallas lit up in a spectacular light show (pictured above) in honour of all who attended.