PHA News
In This Issue
New Website is Live!
Ready, Set, Register!
Making Our Steps Toward a Cure Count Twice
Healthcare Reform Moving Forward
PH in the News
Quick Links
Donate Now
 
Sustainers Circle - Monthly Gift
Upcoming Events
    
 3rd Annual A Cure for "Five Pennies," Daddy's Little Girl
Jan. 23, 2010
Schaumburg, Ill.
 
Tour PHA's New Website
Feb. 2, 2010
Webinar
 
The Woodlands Crawfish Festival
March 27, 2010
The Woodlands, Texas
 
2nd Annual Scramble For A Cure April 17, 2010
Las Vegas, Nev.
 
4th Annual Spur a Cure for PH
April 24, 2010
Phoenix, Ariz.
PHA's 9th International PH Conference and Scientific Sessions
June 25-27, 2010
Orange County, Calif.
Vol 11/Number 1 January 11, 2010
PHA logoPHANews Editor - Sally Maddox
skshmaddox@yahoo.com
Contributing Editors - PHA staff
 
Reaching over 6,500 subscribers
www.PHAssociation.org
PHA'S NEW WEBSITE IS LIVE!
new homepage screenshot
 
It's here! PHA's website has undergone a major overhaul from the design to the navigational structure and we are happy to announce it's live online for you to visit.
 
We'd like to thank the hundreds of PHers who filled out our community survey about changes they wanted to see, our volunteer website guru John Hess, the medical reviewers and the numerous volunteers from the community who helped us test the site before launch.
 
Given the importance of PHA's website in providing you, the PH community, with education and informational resources, community connection and ways to get involved, this was a labor of love. Enjoy!
 
Visit our website, always at www.PHAssociation.org
 
Thank you to our website redesign sponsors, Pfizer and Gilead.
READY, SET, REGISTER!

9th International Pulmonary Hypertension Conference and Scientific Sessions, Riding the Wave to a Cure, Garden Grove, California, USA, June 25-27, 2010

International PH Conference Registration Opens Online Jan. 13

PHA's 9th International Pulmonary Hypertension Conference and Scientific Sessions, Riding the Wave to a Cure, is the largest meeting of PH patients and PH-treating medical professionals in the world. PHA's Conference provides education, networking opportunities and, above all, hope for a cure.

Starting on Wednesday, Jan. 13, you'll be able to register the easy and fast way at PHA's new website. Register early to receive a $25 early-bird discount!

If you have questions about registration, would like a registration form to fax or would like registration brochures mailed to you, contact Registration@PHAssociation.org or 301-565-3004 x764.
MAKING OUR STEPS TOWARD A CURE COUNT TWICE
Path to a CureMount Kilimanjaro is looming large on the horizon for the Path to a Cure climbers. PH experts and SLC members Drs. Raymond Benza and Robert Frantz, along with Jessica Lazar, PA, are preparing to start their climb in less than six weeks. As they post training updates on their blog, the excitement surrounding their adventure is building.
 
We have already turned $25,000 into $50,000 with Actelion's Path to a Cure matching fund. You can make a big difference for the climbers and for the PH community, too. If you donate now, the matching fund will make your donation count twice as much.
HEALTHCARE REFORM MOVING FORWARD
Proposed Healthcare Legislation Addresses PHA's Statement of Principles
 
The Senate passed its healthcare reform legislation on Dec. 24, 2009. The package contains many of the consumer reforms that PHA has supported through our Statement of Principles on Healthcare Reform, including protections from the following:
  • Pre-existing coverage exclusions
  • Medical underwriting
  • Annual and lifetime benefits caps
  • Restrictions on coverage of clinical trials
 
What's next?
In the coming weeks, House and Senate leaders will work to negotiate a final bill based on the Senate bill and the House version, which passed in November. Read a side-by-side comparison of the House and Senate bills (PDF)
PH in the NewsPH IN THE NEWS
Researchers Revisit Pulmonary Arterial  Hypertension Survival
(HealthCanal) - Setting out to determine the survival of patients with pulmonary arterial hypertension (PAH), researchers at the University of Chicago Medical Center and their colleagues also discovered that an equation used for more than 20 years to predict survival is outdated. Accordingly, they developed and recently published a new survival prediction equation that will impact clinical practice and the drug development process. Read article
 
Study to Track Biomarkers of Pulmonary Hypertension
(MedIndia) - Scientists from Johns Hopkins Children's Centre are conducting a study to identify several biomarkers for idiopathic pulmonary hypertension (IPH). Read article
 
Climbing Kilimanjaro to Serve Allegheny General Doctor's Patients
(The Pittsburgh Tribune-Review) - Dangling from the rope attached to his safety harness, nearly halfway up the face of a 500-foot cliff, Dr. Raymond Benza stared at the ground, half-dazed from bouncing off the rocks. He could think only about his wife and son at home. Read article 
 
Association Has Firm Hope that Bill for Pulmonary Ailment Will Succeed
(The Gazette) -
A bill moving through Congress, pushed by the national Pulmonary Hypertension Association of Silver Spring, Md., could provide relief to people with pulmonary hypertension. Read article
 
PHA Offers Air Travel Tips for Patients Using Portable Oxygen
(dBusinessNews) - Considerations for people living with pulmonary hypertension and other chronic diseases. Read article

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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.