June 27, 2012

       
 
PHA News, Pulmonary Hypertension Association, Empowered by hope
Latest Blog Post from PHA's President
    10th International PH Conference

Conference 2012!

The first PHA Conference I attended was PHA's Fourth in June 2000 in Chicago. It was amazing in its connections of patients, families and medical professionals. I'll never forget how large the crowd looked ... » Read more

What's In This Issue
   

» Spotlight On... Sometimes it's PH
» Get Smart
» Living Better With PH

» PH Community Scoop
» From the PHA News Desk
» Medical Community Bulletin
» PH News Headlines

Spotlight On...
    Sometimes it's PH

Sometimes it’s PH: An Early Diagnosis Campaign

As a PH community, we have made a lot of progress together, including securing the approval of nine treatments for the disease. Yet the time it takes for a patient to be diagnosed with PH has remained unchanged for the past 20 years. Join PHA in our bold new initiative to reduce the time from symptom onset to accurate diagnosis of PH by right-heart catheterization. Visit SometimesItsPH.org | Watch and share the campaign video
Get Smart
    PHA on the Road

PHA on the Road Is En Route!

PHA on the Road: PH Patients and Families Education Forums is coming to New Brunswick, N.J. (Sept. 8), and the Chicago, Ill. area (Oct. 13) this fall! Learn about PH diagnosis and treatments and meet fellow PH patients and families at these free day-long events. » Register now

    PHA special event on Great Day Houston

Caregivers Telephone Support Group

Wednesday, July 18, 1:30 p.m. ET/10:30 a.m. PT
Call in toll-free to connect, learn and share strategies and experiences about caring for an adult with PH. The call lasts for one hour — join us for as long as you like. » Learn more

    PHA on the Road family programming

Parents Telephone Support Group

Thursday, July 19, 8:30 p.m. ET/5:30 p.m. PT
Were you at PHA's International PH Conference and want to reconnect with the other parents of PH kids you met? Did you miss Conference, but want to get up to speed? Call in toll-free to reconnect and compare notes. » Learn more

Living Better with PH
    Survival Guide - Fifth Edition

New Edition of Survival Guide Now Available!

The brand new fifth edition of Pulmonary Hypertension: A Patient’s Survival Guide is hot off the presses! More than half of the chapters were updated for this release, including topics like drug treatments, diet, traveling, exercise, emergencies, depression, pediatric PH, insurance and a comprehensive listing of resources. » Order the Survival Guide

PH Community Scoop
    Caffrey Family

Help Make a Community Member a Winner - Deadline June 28!

Shari Caffrey, founder of Taylor’s Wish, an organization created in memory of her young daughter, is one of nine semi-finalists for the Lady Godiva Program. Cast your vote to honor Shari for her commitment to PH awareness and advance her to the finals. Voting ends tomorrow. » Cast your vote!

    Advocate for PH this August Without Leaving your Home State

Advocate for PH this August Without Leaving your Home State!

Every August, Congress goes into recess and your Members of Congress return home to meet face-to-face with their constituents about the issues that matter to them. Take this golden opportunity to educate your Members of Congress and urge them to co-sponsor the Tom Lantos PH Research and Education Act. » Read more

    Social Security Disability

PHA Fights for Disability Assistance

On June 7, members of the PH community went to the Social Security Administration to make our case for why individuals with late-stage PAH should be granted Social Security Disability Assistance more quickly as part of the Compassionate Allowances program. This would allow certain PAH patients to automatically receive disability benefits. » Read more

From the PHA News Desk
    Rebecca Gifford

$226,855 in Conference Scholarships Awarded

The popularity of our Conference Scholarship Program grew tremendously this year. In 2010, we received 376 applications and awarded 186 scholarships to attend our 9th International PH Conference. This year that number grew to 412 applications, and 283 applicants accepted our scholarship offer. We awarded $226,855 in scholarships this Conference! » Read more

    PHA Daily Beat

Stay Connected with Our Daily Blog

We here at PHA hear about all the great things going on in the PH community on a daily basis — it inspires us in what we do! PHA Daily Beat: News for your Health and Heart includes the latest news, stories, events, educational information, opportunities for involvement and more. Read PHA Daily Beat | Subscribe via email or RSS

Medical Community Bulletin
   

Actelion Awards Grants for Research in PAH

Actelion recently awarded grants to four 2012 ENTELLIGENCE Young Investigators for research in pulmonary arterial hypertension. Each researcher will receive a 12-month mentored grant of up to $100,000 in support, funded through the ENTELLIGENCE program supported by Actelion. » Read more (PDF)
PH News Headlines
   

» PH Researchers Tap Unique Gathering of Patients in Orlando to Advance Understanding, Treatment of Deadly Lung Disease

» Pittsburgh Cardiologist Named Physician of the Year by PHA

» Health with Dr. Levister: Understanding Pulmonary Hypertension

» Milestone for Heart Centre

» Daughter Collects Pennies for Mom with PH

» Double Lung Transplant Mum Natalie is Given the All-clear

» More News

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Upcoming Events

July 9, 2012
Swing 4 the Cure Wojo PH Golf Classic
Aliso Viejo, Calif.

July 18, 2012
PHA Happy Hour with Bank of America
Roanoke, Va.

July 27-29, 2012
Scleroderma Foundation National Patient Education Conference
Grapevine, Texas


» Go to the Events Calendar

Video Spotlight

Sometimes it's PH video

Almost three-fourths of patients have advanced PH by the time they are diagnosed. Help us help others by spreading the word about diagnosing PH early. » Watch and share video

Read this week's Generation Hope blog post "Let's Get Together"
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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.