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Pucker Up 4 PH
Take PHA's Focus Group Survey
Learn to Start a Support Group
Support Federal Funding for PH
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District Visits
Health Care Reform Proposals
PH in the News
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Inaugural
PHantastic Raffle and Pucker Up for a Cure

Wash.
 July 18-19, 2009
 
Second Annual Swing 4 The Cure - Wojo PH Golf Classic
Dana Point, Calif.
July 20, 2009
Vol 10/Number 14 July 10, 2009
PHA logoPHANews Editor - Sally Maddox
skshmaddox@yahoo.com
Contributing Editors - PHA staff
 
Reaching over 6,500 subscribers
www.PHAssociation.org
PUCKER UP 4 PH AND YOU COULD BE CHOSEN AS THE 2009 BLUE LIP IDOL!

Pucker Up Megan MalloryPHA-UK is now collecting photos that show PHers and their pals sporting their best puckers to raise awareness of PH. You can show your support and raise awareness in a fun way by uploading your digital photos to PuckerUp4PH.com or by mailing them to the PHA office.
 
But hurry! The entry period will close by the end of the summer. For more information and to get involved, visit PuckerUp4PH.com or contact Christine at international@PHAssociation.org.

Planning an event? Download PDF materials:
Flier | Poster | Press Release | Terms and Conditions
SPEAK YOUR MIND IN FOCUS GROUPS SO PHA CAN BETTER SERVE YOU!

 
Closes July 31

Responding to what we learned from a constituent survey in 2008, PHA is getting ready to offer specialized services, new points of connection and targeted information to five defined populations of PH patients and family members. While respondents were generally very positive about PHA's programs and services, the results indicated that the following groups could benefit from distinct programming:
  • 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
To better understand the wishes of these groups, PHA will be conducting telephone focus groups. If you fall into any of these populations and you'd like to participate, 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.
LEARN HOW TO START A SUPPORT GROUP

DebbieSupport Group Leadership Training Institute event

 

Support Group 101: How to Start a Support Group
July 23, 2009
4:00 p.m. ET
Webinar - via web AND phone
 
Join PHA Volunteer Services Director Debbie Castro to hear about how easy it is to bring patients together to start a new support group. You will learn the steps for bringing patients together and the multitude of ways PHA supports you through the process. This webinar is an introduction for those interested in leading new groups and a refresher for current support group leaders. We will discuss topics such as:
  • Finding a meeting location
  • Outreaching to the community and advertising
  • Providing refreshments
  • Finding topic and speakers ideas
  • PHA Freebies?!
  • And more!

Learn more and register
 
These monthly trainings are a part of our Support Group Leadership Training Institute, endowed by United Therapeutics. 

LEARN HOW YOU CAN SUPPORT FEDERAL FUNDING FOR PH RESEARCH

U.S. CapitolLobby 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.
E-LEARNING AT YOUR LEISURE
PHA's e-Learning Events have been a hit with patients, caregivers, family & friends and medical professionals alike. We've had great educational topics from exercise & nutrition and emergencies to updates on PH treatments and home oxygen regulations - 13 events in total so far.
 
If you've missed any of them, not to worry. We have all the event transcripts and recordings available online for you to view when you have the time.
 
e-Learning Archives

Recently added: Clinical Trials: What's on the Horizon for PAH?
DISTRICT VISITS: POWERFUL MESSAGE, POWERFUL RESULTS

In late May, Charlotte McCabe and Carl Hicks spoke with Rep. Adam Smith about the PH Research and Education Act. Smith became the bill's 20th co-sponsor.
 
More recently, PH community members visited Rep. Patrick McHenry of North Carolina. Even without any of McHenry's constituents in attendance, they shared their personal stories. After hearing the powerful message that co-sponsorship could save lives, McHenry agreed to co-sponsor on the spot.
 
Every member of the PH community has a powerful message to share with elected officials. The best way to share it is with a face-to-face visit. 
 
Register for the Lobby Locally e-Learning Event, or contact Katie at 301-565-3004 x749.
WHAT ARE THE CURRENT HEALTH CARE REFORM PROPOSALS?

With health care reform at the forefront of our nation's agenda, there is an increasing amount of federal health care reform proposals emerging. The Kaiser Family Foundation has created a comparison tool that allows you to compare and contrast all of the major proposals.
 
Learn how you can advocate for health care reform by visiting PHA's Advocacy Action Center.
PH in the NewsPH IN THE NEWS
Tracleer Receives European Union Approval for Treating PH in Children
(About.com) -- Actelion Ltd. announced that the pediatric dispersible formulation of Tracleer (bosentan) for the treatment of PH in children has been approved in the European Union. Read Article
 
Prescription Savings Programs Help Uninsured Individuals Care for Their Health
(HealthNewsDigest.com) -- While government officials and policymakers work toward a more comprehensive solution to the healthcare and economic crises in our country, there are programs that can help those affected save on the prescription medicines needed to maintain a healthy lifestyle. Read Article
THANKS TO OUR DONORS AND MEMBERS FOR MAKING SO MUCH POSSIBLE!

You've made so much possible -- from launching a PHA YouTube channel and funding new researchers, to facilitating the introduction of legislation for expanded funding for PH research and awareness.
 
Read about some of the activities and initiatives that PHA has been able to launch since November 2008 because of our supporters!

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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.