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Upcoming Events
 
PHA's Research Grant Program e-Learning Event
August 6, 2009
Webinar 
 
 Support Group 101: How to Start a Support Group
August 20, 2009
Webinar

Second Annual Painting a Stroke of PHenomenal Hope
September 12, 2009
Okla.
 
Support Group 101: How to Start a Support Group
September 17, 2009
Webinar
 
CAPHS Third Annual Let's Walk & Roll Event
September 19, 2009
Ohio

Third Annual Maine "Swinging for a Cure" Golf Tournament and PH Forum
September 19, 2009
Maine
 
2009 N.C. Cure PH Golf Tournament, Raffle and Silent Auction
September 26, 2009
N.C.
Vol 10/Number 15 July 24, 2009
PHA logoPHANews Editor - Sally Maddox
skshmaddox@yahoo.com
Contributing Editors - PHA staff
 
Reaching over 6,500 subscribers
www.PHAssociation.org
PHA ON THE ROAD PARKS IT ONLINE

PHA On The Road Logo
PHA on the Road: PH Patients and Families Education Forum session materials are now available online! Session materials include select handouts and presentation slides from the four Forums, including sessions on lifestyle modifications and exercise, understanding test results and PH and associated conditions. Other forum attendee favorites include:
  • What Measures to Take When Traveling
  • PAH Issues in Pediatric Patients
  • Recognizing and Overcoming Insurance Obstacles

PHA On The Road Southern California

If you missed a session or were unable to attend PHA on the Road, you can take advantage of these resources for PH education.  
 
Don't forget to check-out the PHA on the Road photo album! PHA will post select audio presentations in August.

WHAT WOULD YOU CHANGE ABOUT PHA'S INSURANCE PROGRAM?

Take Our Insurance Survey To Help Us Build Our Program
Closes August 15
 
Anybody who has been affected by PH is invited to contribute to the development of our Insurance Advocacy and Education Program by participating in one of these online surveys. The feedback provided will help us expand our program and improve our Online Insurance Guide so we can better address your needs.
 
As a special thank you, all participants will have the opportunity to win a PHA Thank You Prize Package that includes Pulmonary Hypertension: A Patient's Survival Guide, a PHA water bottle, a PHA T-shirt and much more!
MAKE IT WORK FOR YOU: BALANCING YOUR JOB AND YOUR PH
A recent New York Times article explores ways to manage your work circumstances if you suffer from a chronic disease.  The article includes information about federal laws that protect your rights and tips about how to talk with your employer.
 
Read Article (free site registration required)
SPREAD THE WORD: LESS THAN HALF OF SYMPOSIUM REGISTRATION SCHOLARSHIPS REMAIN!

Symposium Banner
PH Resource Network Symposium Committee is pleased to announce that over 160 registrants have taken advantage of the scholarships available for the September 24-26, 2009 Symposium!  
 
Leading Progress, Creating Partnerships: Empowering the Interdisciplinary PH Team is enjoying continued strong interest - we anticipate an unprecedented level of attendance by PH-treating allied health professionals at the three-day educational Symposium.
 
There are less than half left of the 300 registration scholarships provided by an unrestricted grant from Actelion. Don't miss your chance to receive a complimentary registration (with a $50 refundable deposit)! 
 
Register now!
TIME IS RUNNING OUT! SPEAK YOUR MIND SO PHA CAN BETTER SERVE YOU!
Take the survey!
Closes July 31

Many thanks to over 150 PH patients and caregivers who have responded to our call for focus group participants! PHA is still looking for input as we get ready to offer specialized services and new points of connection to members of five defined populations:
  • Newly diagnosed patients (4 years or less)
  • Young adults (18-30) with PH
  • Patients whose PH is related to another disease
  • Families with children with PH
  • Caregivers of PH patients

If you fall into any of these populations and you'd like to participate in a telephone focus group, please complete the online survey and tell us a little about yourself!
 
PHA is grateful to the Medtronic Foundation for providing funding to help us launch this new initiative.

PH in the NewsPH IN THE NEWS
Actelion Moves Oral Prostacyclin Analogue into Phase III Studies
(BioWorld.com) -- With positive data from a Phase IIa trial in hand, Actelion AG plans to move directly into a Phase III morbidity/mortality trial of its first-in-class oral prostacyclin (PGI2) receptor agonist in PAH before year-end. Read Article
 
FDA Looks Into Xolair Side Affects
(PharmacyNews.com) -- The U.S. Food and Drug Administration is looking into findings of a study which suggested that Xolair (omalizumab) had caused an increased number of cardiovascular and cerebrovascular adverse events, including pulmonary hypertension. Read Article

 

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.