June 29, 2011

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

Global Partnerships ... Greater Strength and Knowledge for Us All

Several months ago, PHA announced the U.S. and international recipients of PHA's 2011 Tom Lantos Innovation in Community Service Awards. PH Israel was one of the awardees. Here is a note from Dr. Yosef Gotlieb to PHA's Senior Vice President, Adrienne Dern, on the outcome of their project. » Read more

What's In This Issue

» Spotlight On... Letter Writing Campaign
» Get Smart
» Website Discoveries
» PH Community Scoop

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

Spotlight On...

PHA on the Road Attendees Exceed Congressional Letter Writing Goal

PHA on the Road brings together a cross section of the PH community, each with a personal connection to the disease. This year at each PHA on the Road, attendees gathered together to share their journeys and educate their Members of Congress. » Learn more

Get Smart

Newly Diagnosed? What You Need to Know

Tuesday, July 5, 1:00 p.m. ET, Webinar
If you're newly diagnosed, then this webinar is for you. The webinar, presented by Glenna Traiger, RN, MSN, will review the basics of what every PH patient should know about treatment and coping with the disease. » Register now


Fight the Cause Online

Wednesday, July 13, 3:30 p.m. ET, Webinar
Are you on Facebook? If so, this is the webinar for you! PHA staff and community members Colleen Brunetti and Lucia Martuccio will talk about how to use social networking sites to take action in support of PH research and education, as well as how you can go beyond Facebook to make a bigger impact and raise more funds using PHA's easy online tools. » Register now


Parents Support Group Webinar: Obtaining and Maintaining Insurance Coverage for Your Child

Thursday, July 21, 8:30 p.m. ET/5:30 p.m. PT
Hear from experts at Caring Voice Coalition and other parents about how to overcome some of the challenges of getting – and then keeping – coverage for your child. Whether your child is 5 or 25, come ready with questions and suggestions! » Register now


PHA on the Road: 2011 Road Trip Wrap-up

PHA traveled to four new cities this year with PHA on the Road – Seattle, Pittsburgh, St. Louis and Minneapolis. More than 800 PH patients, family members and medical professionals attended across the four forums in 2011. PHA plans to go back "on the road" in 2012 – so stay tuned!!


Submit a Theme for the 2012 International PH Conference!

There is still time to help PHA create the theme for our 10th International PH Conference and Scientific Sessions, taking place June 22-24, 2012, in Orlando, Fla. The person whose theme is chosen by the Conference Committee will receive a complimentary registration to Conference. » Learn more

Website Discoveries

Things I Found by Kathryn Frix: My Account

Today I found something that I knew about, but had not visited in a long time. I had actually forgotten how useful this resource is. I'll pose a few scenarios and see if my resource can provide a solution to all of them. » Read more

PH Community Scoop

June Special Events Make a Big Splash!

PHA extends a big thank you to all those who kicked off summer in style with June special events. We had a race, a walk, a Bunco tournament and much more. » Learn more


Busque Noticias? PH Latin Society Newsletter Available Online

A new website showcases "Boletín," the newsletter of the Sociedad Latina de Hipertensión Pulmonar (PH Latin Society). This quarterly e-newsletter showcases patient stories and news from PH communities throughout Latin America. PHA has not had a role in the production of this newsletter. Email with any questions or comments. » Learn more

From the PHA News Desk

Legislative Visit Builds Support for PH Bill, PH Research

"I never thought I could make a difference!," says Joy Gore. When Joy attended PHA's Congressional Luncheon in November, she talked with Dvora Lovinger, Rep. John Sarbanes' health LA, about what it's like to live with PH. A few weeks ago, Joy followed up. » Find out what happened

Education and Hope in Three Minutes or Less

New web videos provide PH patients with snapshots of essential information to take the first steps after diagnosis. Videos feature leading medical professionals explaining PH and its treatment, and advice from experienced patients to help new patients get back on their feet. » Watch them now! Distribution made possible by LungRx.


PHA's 2011 Calendar Wins APEX Award

APEX 2011, the 23rd annual awards program recognizing excellence in publications, presented PHA with an Award of Publication Excellence in the Calendars, Posters & Certificates category for our 2011 community calendar - Express Yourself in 2011. » Email to request a copy of the calendar

Medical Community Bulletin

Fewer Than 120 FREE Registrations Left!

If you haven't registered for the PH Professional Network Symposium taking place September 22-24 in Arlington, Va. – now is the time! The first 300 PH-treating allied health professionals register for free, and registrations are going fast. Fewer than 120 free registrations remain, so register today! » Learn more


PHA Online University Course: PH in Scleroderma, from a Nurse's Perspective

If you missed this webinar live, you can now find a recording of it on PHA Online University. This course, hosted by Barbara Smithson, RN, offers FREE Nursing CEUs after completion of a post-test and evaluation. » Learn more

Also of Interest

Join PH Patient Kim Ford for July 8 PH Awareness Day

PH patient Kim Ford is taking her search for a cure with her everywhere she goes … and a lot of places she's never been. From her Facebook account in Maryland, Kim's organizing a PH Awareness Day on July 8. » Learn more


50 State Media Challenge: Jim Gebhardt Links Passion and PH Awareness

In the last month, members of the pulmonary hypertension community appeared in nine PH-focused news articles, bringing the total number of news hits to 46 articles in 28 states! One of the most recent successes came from PH patient and longtime motorcycle enthusiast Jim Gebhardt. » Read more

PH News Headlines

» Learning to Manage When the Doctor Says, "We Can't Fix It."

» Gebhardt Rides with a Purpose

» Former Resident Battling PH

» Toddler with Artificial Lung Survives

» Car Accidents and Train Delays Can't Halt Charity Walkers

» More News

Connect with PHA

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

Upcoming Events

July 5, 2011
Newly Diagnosed? What You Need to Know
webinar: online and phone

July 8-10, 2011
The Scleroderma Foundation's 2011 National Patient Education Conference
San Francisco, Calif.

July 13, 2011
Fight the Cause Online
webinar: online and phone

» Go to the Events Calendar

Video Spotlight

Fight to Cure PH Video

Join Carl Hicks in the Fight to Cure PH. Watch the video. Share it! Take Action.

PHA Sustainers Circle

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.