August 10, 2011

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

Slow Walker...

For the past few weeks, Meghan Tammaro, who manages PHA's international work, has been in touch with Gloria Huanghuan, a PH patient in China. Gloria is organizing a new PH association there - iSEEK - which she hopes will complement the work being done by her doctor, who founded PHA China. » Read more

What's In This Issue

» Spotlight On... Conference 2012 Theme
» 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...

10th International PH Conference Has a Theme!

PHA is heading back to its roots with the 10th International Pulmonary Hypertension Conference and Scientific Sessions, June 22-24, 2012, in Orlando, Fla. Earlier this summer, PHA invited members of the PH community to submit ideas for a theme to mark this special anniversary Conference. » Learn more

Get Smart

Parents Telephone Support Group: Balance - Caring for Yourself

Thursday, Aug. 18, 8:30 p.m. ET/5:30 p.m. PT
Call in to share tips for caring for yourself while caring for your child who has PH. Dial toll-free from the U.S. or Canada: 1-866-740-1260. When prompted, enter access code: 5653004. » Learn more


PHA on the Road: Session Recordings Now Available

Select sessions from the Minneapolis, Minn., PHA on the Road forum on June 18 are now available online. Session topics include How is PAH Diagnosed, Understanding Transplant Options, PH and Connective Tissue Disease and more. » Continue your education at PHA Classroom

Living Better with PH

16 Tips to Help You Shake Your Sodium Habit

Did you know that milk, parsley flakes, aspirin, and some brands of toothpaste and mouthwash contain sodium? If your doctor has advised you to follow a low-sodium diet, don't forget to read your labels! » Read more tips

PH Community Scoop

7th and Last Calif. PH Forum

PHA thanks the California PH Forum committee - Kelli Danner, Rita Orth, Judy Vucci and Jeannine Hart - for their work organizing the 7th and last biennial regional educational event for patients in the Bay Area. More than 13 years ago, this committee was formed by Bay Area patients to educate the PH community on the latest developments in the diagnosis, care and treatment of PH.


Participate in PHA's Telephone Support Group

On July 28 PHA hosted its first ever Telephone Support Group, with 17 in attendance. This group reaches out to those who can't make it to local meetings, whether because of health, work hours or distance. Interested in the next meeting? Contact
From the PHA News Desk

New Resource Packet for Caregivers

Are you or someone you know a caregiver to a PH patient? PHA now offers a free information packet, Resources for Family and Friends, to help caregivers plan their next steps after a loved one's PH diagnosis, find important resources and connect with other caregivers. » Request your kit

Give to Research: The Path to Long, Healthier Lives

Dr. Serpil Erzurum, Chair of the PHA Scientific Leadership Council's Research Committee, spoke with PHA about what can be accomplished through PH research. Only through research, she said, can we get to a future where PH patients live long and healthful lives. » Read our interview and support PHA's research program today


A Fresh Face for CARD-iology

In 2006, the work of four talented artists in the PH community was turned into PHA's popular CARD-iology greeting card pack. These cards - and the stories they tell - have reached hundreds of people. This summer, the cards have been refreshed! Featuring the same inspiring stories and artwork, each design is now available on a distinctively colored notecard with blank interior. » Order your cards today

Medical Community Bulletin

PHA to Launch New Find a Doctor Directory

On Sept. 1, PHA will launch a new, expanded Find a Doctor Directory, PHA's premier resource for patients seeking PH-treating physicians. Members of PH Clinicians and Researchers (PHCR) have the exclusive opportunity to be listed in this directory. Current PHCR members, update your profiles today (sign in required) to make sure your full practice information is included. Lapsed members renew your membership.

Questions? Email


Building Medical Education in PH Event in Fla.

Saturday, Aug. 27, Jacksonville, Fla.
"Pulmonary Hypertension Update 2011" will take place at the Mayo Clinic in Jacksonville. This course is designed to improve and update the knowledge of the healthcare provider for evaluating and managing pulmonary arterial hypertension. » Learn more

Advocacy Day at Symposium: Be the Voice of the PH Community

The PH Professional Network Symposium kicks off on Thursday, Sept. 22, with Advocacy Day on Capitol Hill. Training, transportation and a free boxed lunch mean Advocacy Day is a fun, easy way for you to educate Members of Congress about PH legislation and make a difference for your patients. » Learn more and register


PHA Online University Live Webinar: Making the Most of a Legislative Visit

Thursday, Sept. 1, 1:00 p.m. ET, Webinar
Whether you're planning to attend the PH Professional Network Advocacy Day or are just looking for some tips on effective legislative visits, this webinar is for you! Hosted by Katie Kroner, PHA's Director of Advocacy and Awareness, this webinar will help make you comfortable with the legislative visit process. » Register now


Fewer than 90 FREE Symposium Registrations Remain!

You still have time to register for the 2011 PH Professional Network Symposium taking place Sept. 22-24 in Arlington, Va. Fewer than 90 FREE registrations remain for allied health professionals interested in attending. Earn up to 11.25 hours of continuing education credit for FREE. » Learn more


FREE Training Available for Clinical Trial Investigators

The Investigator Training Program (ITP) is a FREE educational program designed by Pfizer and hosted by PHA taking place Sept. 24-25 in Arlington, Va., immediately following the PHPN Symposium. This program supports clinical trial investigators and their study staff by helping improve the skills required during the trial process. Registration is limited to the first 60 investigators, so register now! » Learn more

Also of Interest

Nominate Your Amazing Nurse

We all know that nurses are an integral part of any PH medical team. Through Johnson and Johnson's "Campaign for Nursing's Future," you can recognize the important nurse (or nurses!) in your life by submitting a nomination for the Amazing Nurse contest. » Learn more


New Disease States Added to Compassionate Allowances

The Social Security Administration announced the addition of 12 conditions to their Compassionate Allowances initiative, a program designed to quickly identify medical conditions that automatically qualify applicants for Social Security Disability. Although PH is not on the list, more additions are expected this year and PHA continues to advocate for the inclusion of stage IV PH. Find out which diseases were added | Learn more about PHA's work with Compassionate Allowances

PH News Headlines

» Pulmonary Hypertension in Sickle Cell Disease

» Hemodynamic and Clinical Onset in Patients with Hereditary PAH and BMPR2 Mutations

» PHA and MedicAlert Foundation Form Alliance

» Swimming to Her Limit: Midland Woman Fights Pulmonary Hypertension in the Water

» Powered by Positivity

» Badman's Name Lives on with Softball Tournament

» Family and Friends Rally Round to Raise £40,000

» More News

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Upcoming Events

Aug. 13, 2011
Minnesota/Twin Cities PH Support Group 11th Annual Picnic
Maplewood, Minn.

Aug. 18, 2011
Parents Telephone Support Group Call: Balance - Caring for Yourself

Aug. 30, 2011
Iron Pigs PHA Fundraiser
Allentown, Penn.

» Go to the Events Calendar

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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.