July 20, 2010

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PHA News
Latest Blog Post

lungs with blood pressure cuff

A striking point...

On June 29, the following appeared in an article titled FDA Weighs Rare Disease Drug Regulation But Agency Nixes New Division in the publication, FDA Week. » Read more

What's In This Issue

» Spotlight On... Survival Guide
» 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...

Survival Guide cover

Hot Off the Press: Newly Revised Survival Guide

The newly revised Pulmonary Hypertension: A Patient’s Survival Guide is now available. Chapters updated in this Summer 2010 reprint include: “PH: The Other High Blood Pressure,” “Who Gets PH?,” “PH Treatments: The Basics,” “PH Drugs,” and “Resources.” » Order now

Get Smart

balloon release at PHA special event

e-Learning Event: Take Event Planning 101

Thursday, July 22, 2:00 p.m. ET, Webinar
Join PHA’s Jessica McKearin to learn all you need to know about planning an event, large or small, that raises awareness and funds for PH. » Register now
Posted » Watch Caregiver webinar recording

    PHA on the Road

PHA is “On the Road” Again

Registration is now open for PHA on the Road events in the Baltimore/Washington, D.C., area (September 25) and Dallas, Texas (October 2). This year's events feature programs for patients, caregivers, parents and children. » Register now for this free day of patient education

Living Better with PH

Stibbs family at summer event

Summer Heat is Here: Be Prepared!

Enjoy summer without letting the heat take over. Weather conditions – like the blazing summer sun – can affect PH patients and their health. Learn how to prepare for and handle the scorching summer and any other weather conditions that come your way. » Read more

PH Community Scoop

Stu Berwick at BlogosPHere

Quiltwork of PHer Stories from Conference

The stories of our rich, diverse community shine through in this year’s Conference blog. Through their own words and experiences, our community members provide inspiration, support and invaluable information to each other. » Read more

    Betty Lou Wojciechowski and Alex Flipse on panel of making connections

Conference Connections: Finding PHriends

Attendees of the “Creative Connections” Skill Building Session at PHA's International PH Conference didn’t just get a chance to learn how to meet other patients, they got to make PHriends there, too. » Read more

    boy puckering up for PH

Lend Your Lips for a Cure!

PuckerUp4PH is circling the globe again… PHA United Kingdom is once again spearheading the international PuckerUp4PH campaign and you can be part of raising PH awareness and setting a Guinness World Record! » Read story

From the PHA News Desk
    PHers at district visit

Connect Locally with your Members of Congress in August

Share your PH story with your Members of Congress — it’s the most effective way to gain their support for PH legislation. For tips on connecting with your Members of Congress: Go to the District Visit Campaign site | Listen to the Lobby Locally e-Learning Event recording

sample Medicare card

Do You Know Your Medicare Basics?

Medicare Part A covers inpatient hospital care, Part B covers doctors’ visits and durable medical equipment, and Part D is prescription drug coverage. Our Online Insurance Guide provides additional details and resources about Medicare. » Visit the Medicare section

    insurance victory

V is for Victory: Insurance Victory!

Do you have an insurance victory? Are you looking to get involved and inspire other PH patients? Share your personal victory through our Online Insurance Guide and let other patients know that overcoming insurance challenges is possible. Read a success story | Submit your own story

    Apex 2010 Awards for Publication Excellence

PHA Receives Awards of Excellence

APEX 2010, the twenty-second annual awards program recognizing excellence in publications, presented PHA with Awards of Publication Excellence for PHA's quarterly print newsletter, Pathlight, and PHA's newly redesigned website. » Learn more

Medical Community Bulletin

PAH Pulmonary Arterial Hypertension

Medical Professionals: Attend a 30-City Medical Education Program

New cities have been added to PHA’s 30-City Medical Education Program, a program of PHA’s Medical Education Fund. Destinations for August include Cheyenne, Wyo.; Grand Junction, Colo.; Johnson City, Tenn.; and Louisville, Ky. » Find an event in your area and register today

Also of Interest

Scleroderma Foundation

Scleroderma Patients Gear Up for 2010 Conference

On July 30-August 1, the Scleroderma Foundation will host its 2010 National Patient Education Conference in Boston, Mass. The event features more than 54 workshops, covering a range of topics (including PH, a common complication in scleroderma patients). » Learn more


Coumadin Recall

Bristol-Myers Squibb Initiates a Nationwide Voluntary Recall of Coumadin® 1 mg Tablet Blister Packs » Learn more

PH News Headlines

» Girl, 9, Remains Playful Despite Lung Disease

» Data Published on Novartis QT1571 for Treatment of Severe Pulmonary Arterial Hypertension

» Identical Twins, Born Prematurely, are Finally Reunited After One Twin Spent 17 Months in the Hospital for Pulmonary Hypertension

» Echocardiography May Help Detect Pulmonary Vasculopathy in the Early Stages of Pulmonary Artery Hypertension Associated with Systemic Sclerosis

» More News

Connect with PHA

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Upcoming Events

July 22, 2010
Put the Special in Special Events: PHA Local Event Planning & Fundraising 101
webinar: online and phone

July 30-Aug. 1, 2010
Scleroderma Foundation 2010 National Patient Education Conference
Boston, Mass.

Aug. 14, 2010
10th Annual MN Support Group Picnic
Maplewood, Minn.

» Go to the Events Calendar

Video Journeys

Amanda McKee journey at Conference

» Our Journeys
Amanda McKee shares her journey at PHA's Conference.

Quick Poll

Do you have a copy PHA's Patient's Survival Guide?

» Take our Quick Poll!

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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.