10 April 2018

Update from the PHNA (Pulmonary Hypertension Network Australia)

The PHNA (Pulmonary Hypertension Network Australia) is a very active patient-facing organisation for patients and professionals based in Western Australia. It has recently published it's quarterly PHan Mail magazine, which we'd like to share!

The magazine started out in 2010 with a very humble but informative offering and now offers a full gloss colour 20 page magazine full of interesting and varied topics on PH and other health issues as well as lighter and interesting articles.

Some highlights from the latest magazine include:

  • A donation from Actelion Pharmaceuticals in December 2018 to begin a new long term project, the Lifestyle Series, which aims to help patients live well with this long term chronic condition.
  • The 2018 theme is "The Year of the PH Superheros". On Saturday 5th May, which is World PH Day the first ever PHNA Awareness Awards will be launched. 
  • In February this year we were invited to attend the World Congress hosted by the PVRI. Our President Rom Dumitru attended along with hundreds of delegates from the medical professional world of PH. PVRI are the only global charity working towards a network approach for professional collaborations, while still including the PH community of people living with or caring for someone with PH. They are very inclusive and enthusiastic and it was a great honour to have been invited. Our President got to hear about a lot of the latest research and development, including research outcomes, all of which were very interesting and promising. There was a particular slant towards combination therapy. They included a patient test case from Singapore, and many people spoke about their experiences with PH, including our President Rom, which gave them a sense of what it's like from the other side. We have included their story in the magazine and are very pleased to say that they have endorsed PHNA on their website internationally.
  • Our Patron Professor Eli Gabbay attended the World Congress in Nice for the WHO where they gather every 5 years to reclassify the Pulmonary Hypertension classes. He will be guest speaking later in 2018 at one of our support group gatherings. We will try to record this session and post it online for everyone to share in as well as update you in our magazine and other networking tools. 
  • The Lung Foundation Australia is working with the PHNA to promote support groups across the nation to include people living with pulmonary hypertension.  
  • The PHA USA is hosting their bi-annual world conference this June in Orlando. 
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