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Upcoming E-Learning Events
Conference Theme Contest Closing
PHA On The Road Successful
Insurance Resources
New "Our Journeys" Posted
PH in the News
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2009 JFK Tower Golf Tournament
June 29, 2009
New Jersey
 
2nd Annual Swing 4 The Cure - Wojo PH Golf Classic
Dana Point, Calif.
July 20, 2009
Vol 10/Number 13 June 26, 2009
PHA logoPHANews Editor - Sally Maddox
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Contributing Editors - PHA staff
 
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JULY E-LEARNING EVENTS: CLINICAL TRIALS & LOBBY LOCALLY

medical researcherClinical Trials: What's on the Horizon for PAH?
 
Presenter
Dr. Vallerie McLaughlin Chair of PHA's Scientific Leadership Council
 
Wednesday, July 1, 2009
7:00 p.m. ET
Webinar - phone AND web
 
Register now!

Clinical trials in PAH have led to the FDA approval of six therapies over the past 13 years! This is your opportunity to learn more about the clinical trials process, and hear about the various clinical trials that are currently active and those that have recently been completed.

U.S. Capitol
Lobby Locally! Visit Your Members of Congress Without Leaving Your State
Monday, July 20, 2009
8:00 p.m. ET
Phone Conference Call Discussion

Want to make a difference on Capitol Hill without leaving your state? In August, when Congress is in recess, you can visit your representative in his or her district office and play an essential role in increasing funding for PH research! 
 
Join this call to learn tips for a successful and effective district visit, and find out how PHA can help YOU advocate for PH research. Carl Hicks will share how easy and essential advocacy is. PHA's Washington Representative, Gavin Lindberg, will be on hand to answer your questions about PHA's advocacy agenda.
 
PHA's monthly e-Learning Events are made possible through unrestricted educational grants from Eli Lilly & Company and Pfizer Inc.
CONFERENCE THEME CONTEST CLOSING SOON!
The 9th International PH Conference and Scientific Sessions theme contest deadline is Tuesday, June 30. The winner of the theme contest will receive one complimentary registration to attend Conference on June 25-27, 2010 in Garden Grove, Calif.
 
Past Conference themes include "From Puzzle to Picture," "Roadmap to a Cure," and "A Journey of Hope and Discovery." What will the 2010 theme be? You tell us! 
 
Send your submissions to Conference@PHAssociation.org for consideration by PHA's Conference Committee!
PHA ON THE ROAD: A COAST-TO-COAST SUCCESS

PHA On The Road Southern CaliforniaThis year, PHA went on the road with the first-ever PHA on the Road PH Patients and Families Education Forums. PHA reached over 960 attendees across four Forums, including patients, caregivers, families, friends, physicians and nurses in Coast Mesa, Calif., Buena Vista, Fla., Dearborn, Mich. and Providence, R.I. 
 
In the photo, Dr. Kelly McCann and Seth Schneider lead a yoga demonstration at the Southern, Calif. Forum on May 30.

Presentation materials from the Forums will be made available online July 24.
 
NEW INSURANCE RESOURCES AVAILABLE
Need help paying for prescription drugs? An article in the Los Angeles Times lists four drug-assistance programs that might help cut monthly costs for both insured and uninsured patients. NeedyMeds also has a drug discount card for medications not covered under your insurance plan.
 
Questions about disability laws and regulations? The Disability Law Handbook, published by the Disability and Business Technical Assistance Center (DBTAC), outlines federal laws, such as the Americans with Disabilities Act, and government programs, such as Social Security Disability.
 
You can also visit PHA's Online Insurance Guide for more information. While much of the information in our Online Insurance Guide continues to be relevant, we are in the process of updating it. If you identify areas in need of update or content that you think should be added to this resource, please contact PHA at insurance@PHAssociation.org.
PHERS SHARE THEIR STORIES- NEW OUR JOURNEYS POSTED

The PH community is built on the strength of personal stories. Stories of trials, triumphs and hope are beacons to newly diagnosed patients; they're also reminders to us all of who we are as a community. Our Journeys is a collection of over 200 of these stories, including 12 new stories added this month. 
 
Check out these new Journeys, and browse the entire collection of stories!
 
We're interested in hearing your story, too! On the page, just click "Share Your Story" to contribute to the growing voice of the PH community.
PH in the NewsPH IN THE NEWS
Pharmac to Fully Fund Heart Condition Treatments
(voxy.co.nz) New Zealand -- Pharmac to add PH treatments to the Pharmaceutical Schedule. Read Article
 
Expedition to Mount Everest Offers New Insights into Chronic Disease
(eon.com) --  Results of the HIGHCARE2008 Project were announced during the recent 19th Scientific Meeting of the European Society of Hypertension (ESH), Milan, Italy. 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.