*Special Invitation*

You are invited to "Life Goes On - Living With Pulmonary Hypertension" - an information day for patients and their families.

Saturday 22nd November 2008
Victor Chang Cardiac Research Institute.
405 Liverpool Street
Darlinghurst 2010 NSW
Parking is available at St.Vincents Car Park on Victoria Road for a day rate of $10.00. It is a level 5 min walk to the Victor Chang Institute.

Registration begins at 9:15am with conference running from 9:30am- 4:30pm. We will have plenty of breaks and discussion time. Lunch will be provided.

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*Media Release*

Media Release November 22 2008 - Pulmonary Hypertension Patients Celebrate a Longer Life

Download Media Release Document. Adobe Acrobat Reader is required to view this document.

PH NSW – OUR MISSION

Pulmonary Hypertension – Providing Hope and Promoting Health Together

Pulmonary Hypertension NSW is a support organisation run by patients for patients, their family and friends.

Our Mission is to reach all those who are touched by Pulmonary Hypertension and to support them as they come to realize and accept the challenges of living with Pulmonary Hypertension. We also strive to help raise awareness of this condition and to promote early detection of symptoms and diagnosis.

WHO WE ARE

We are a registered not for profit organisation run by patients for patients, their families and friends. We provide a support service for patients and also strive to continue to raise awareness of Pulmonary Hypertension.

WHERE WE HAVE COME FROM.

Pulmonary Hypertension NSW started with three patients that met through the Pulmonary Hypertension Clinic at St Vincent’s Public Hospital Sydney. With the help of the PH nurses at the Heart and Lung Clinic we had our first patient meeting on Monday the 13th of November 2006. We have meetings every 2 months that are organised and run by a Pulmonary Hypertension Patient, and other members of the group.

We have had great support in starting up our support group and services and we would love to help more support groups begin. So if you would like to facilitate a support group in your area please e-mail us through info@phnsw.org.au

WHAT WE ARE DOING NOW

Pulmonary Hypertension is active in many areas including the following:

• Pulmonary Hypertension NSW runs a support group that meets every 2 months on a PH clinic day in a meeting room at St Vincent’s Public Hospital. We have some meetings that are purely a social catch up with each other – Like our annual December Christmas meeting, and others that have an educational focus, like exercise and Pulmonary Hypertension, the basic of what pulmonary hypertension is and raising awareness for Pulmonary Hypertension.
• PH NSW provides mail-outs of information and news letters that go to all patients registered with us. This is a vital service that allows patients that are not well enough to attend meetings, those who have work commitments, or those who just live to far away to get to each of the meetings to still be linked to other patients with PH, and still benefit from the education sessions that we provide.

We now (2007) have over 50 patients registered with us including patients spread right across the state of NSW. We also have a number of patients’ interstate, and even an overseas patient. If you would like to register with us for mail-outs please email your details to info@phnsw.org.au

We now compliment the mail out service with a message bank service, so that all patients can easily contact us, and we return all calls as soon as possible. You can call our message bank on 02 8250 1150.

We also endeavor to keep regular phone contact with our members. These phone calls are received very well, particularly by patients who have become house bound with this condition. This also giving these patients a voice and a sense of belonging to our community.

We provide support materials to our members including:

• informative newsletters
• PH information cards that can be used to help raise awareness, and a good brief description of this condition and even more importantly it can be used in an emergency to identify your condition
• This new website where more information can be found, you can also keep in contact with us through e-mail: info@phnsw.org.au

We also provide support materials to our Doctors and other health care professionals, in the form of quarterly medical journals: Advances in Pulmonary Hypertension. This journal is supplied to us through the Pulmonary Hypertension Association in America – sponsored by Pfiser in America.

We also have fundraising activities to help support the activities of this organisation. We have also been kindly supported by donations from:

• Individual members – family and friends
• Actelion
• Patients First
• Pulmonary Hypertension Association - America
• Pulmonary Hypertension Association - Australia