April 20, 2011

PHA News, Pulmonary Hypertension Association, Empowered by hope
Latest Blog Post from PHA's President

Rev. White Comes to Washington...

PHA Board member Steve White came to Washington to help get the Tom Lantos PH Research and Education Act introduced with a good number of original sponsors. This is his story. » Read more

What's In This Issue

» Spotlight On... New PH Bill
» Get Smart
» Living Better with PH
» PH Community Scoop

» From the PHA News Desk
» Medical Community Bulletin
» Also of Interest
» PH News Headlines

Spotlight On...

New PH Bill is Here!

The Tom Lantos Pulmonary Hypertension Research and Education Act of 2011 was just introduced in the Senate by Sen. Bob Casey (D-PA), and Rep. Kevin Brady (R-TX) will soon introduce it in the House. Learn more | Email your senators today | Join PHA's National Call-In Day on April 26

Get Smart

Parent Support Group Call: Summer Planning

Thursday, April 21, 8:30 p.m. ET/5:30 p.m. PT
Call in to swap tips for summer planning with other parents of kids who have PH. This conversation will be open for one hour; join us for as long as you’d like. Dial toll-free from the U.S. or Canada: 1-866-740-1260. When prompted, enter access code: 5653004. » Learn more


e-Learning Event: How Healthcare Reform Affects the PH Community

Monday, May 2, 3:30 p.m. ET, Webinar
Curious about changes in healthcare since the passage of the Affordable Care Act (ACA)? Join Gavin Lindberg, PHA’s Washington Representative, as he explains ACA basics, how the ACA has already affected the PH community, and what to expect in the future. » Learn more and register now

ATS 5th Annual Free Patient Forum

Saturday, May 14, 10:00 a.m., Denver, Colo.
PHA and the American Thoracic Society (ATS) will host a “Meet the Experts” PH session on Saturday, May 14, in conjunction with the ATS International Conference in Colorado. Learn about the latest in research, clinical trials and clinical care from PH experts. » Learn more

PHA on the Road: Register Now!

Don’t forget to register for PHA on the Road, PHA’s FREE regional patient and families education forum. We’re making stops in Seattle (June 4), Pittsburgh (June 11), St. Louis (June 11) and Minneapolis (June 18). Space is limited so register early! » Learn more

PHA Classroom: Tell Us What You Want to Learn!

PHA Classroom provides PH education to patients and caregivers in the comfort of their own home. If you have a great idea for a topic we haven’t covered yet, we want to hear from you! Email your suggestions to » Visit PHA Classroom
Living Better with PH

Help Children Cope with a Parent's Illness

Learn strategies for helping kids understand a parent’s illness at each developmental stage. Authored by a PH patient who's an education specialist and an RN/OCN, this resource urges you to reassure children at every age that a parent’s illness is not their fault. » Read more

  PH Community Scoop

Support Group 101

Want to find other patients? Wondering what it takes to start a PH patient support group? PHA guides you through everything from advertising, outreach and community relationship-building to finding a meeting location and more. Learn how to start a group | Request a Support Group Leader Manual


Thank You, Spring Event Planners!

With creative themes and a community focus, these  recent events made a huge impact: The Woodlands CrawPHish Festival (The Woodlands, Texas); 5th Annual Spur a Cure for PH (Phoenix, Ariz.); Inaugural Ellie Godina Walk 2 Cure PH (Euclid, Ohio); 3rd Annual Scramble for a Cure (Las Vegas, N.V.). » Learn more about special events
From the PHA News Desk

Pledge to Call In on April 26

April 26 is PHA’s National Call-In Day! PHers all over the country will call their Members of Congress and urge them to co-sponsor the Tom Lantos PH Research and Education Act of 2011. Join us! Email to make your pledge. Then, invite 10 friends! We’ll send you everything you need. » Learn more

50 State Media Challenge: PH News Coverage in 16 States and Counting

Since the beginning of 2011, PHers have generated 20 news articles in 16 states. Is your state one of them? Get involved in the challenge | Find out which state has the most media successes


Making a Difference, Year After Year

Twenty years ago, there was no hope, little knowledge and scant research about pulmonary hypertension. Today is different. With the financial support of our community, hope is alive and knowledge and research have flourished. You can help us achieve even more. Learn more | Donate now

Medical Community Bulletin

FREE Registration Available for PH Professional Network Symposium

Close to 100 FREE registrations have already been given away for the 2011 PH Professional Network Symposium. Allied health professionals, register early while there are FREE registrations left! » Learn more

PHA Online University Course: Diagnostic Evaluation of Suspected PAH Symptoms

Hosted by Namita Sood, MD, FCCP, this course discusses early and proper diagnosis of PH by teaching how to recognize signs and symptoms of the disease and how to assess the severity. FREE CME credits are available after completion of a post-test and evaluation. » Learn more

Invitation for Physicians and Researchers to Attend ATS Event

Actelion Pharmaceuticals US, Inc. and the ENTELLIGENCE Steering Committee invite physicians and researchers to the 2011 ENTELLIGENCE™ Young Investigators Award Ceremony to be held on May 17 during the upcoming American Thoracic Society (ATS) meeting in New Orleans. » Learn more (PDF)
Also of Interest

health insurance

BlueCross BlueShield Revokes Detrimental Policy

Thanks to the advocacy efforts of PHA’s Scientific Leadership Council (SLC) and the Duke Pulmonary Hypertension Center, BlueCross BlueShield (BCBS) of North Carolina has revoked its policy of prohibiting coverage of PAH combination therapy. » Learn more

PH News Headlines

» Dunwoody High to Host 5K

» More News

Connect with PHA

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Email a mentor. Patients and caregivers are ready to support you.

Upcoming Events

April 21, 2011
PHA Parents Telephone Support Group

April 30, 2011
The Grape Escape 2011
Richwoods, Mo.

April 30, 2011
Dunwoody High School 5K
Dunwoody, Ga.

» Go to the Events Calendar

Video Spotlight

Trish Duque

Watch Trish Duque, an organizer for the Spur a Cure for PH fundraiser in Phoenix, Ariz., talk about her connection to PH and why she got involved raising funds and awareness through special events.

Web of Friends

Need more information? Contact
Pulmonary Hypertension Association 801 Roeder Road, Ste. 1000 Silver Spring, MD 20910
Office: 301-565-3004 | Fax: 301-565-3994

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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.