June 15, 2011

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



Ten Years Ago Today...

I met Bill and Laura O'Donnell and their daughter Shannon six or seven years ago when they volunteered to help staff a PHA table at an event at Tufts Medical School. ... Yesterday, Bill posted an essay to the PHA support group leader list serv marking the tenth anniversary of Shannon's diagnosis with pulmonary hypertension. » Read more

What's In This Issue


» Spotlight On... Advocacy on the Road
» 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...


PH Advocacy Goes on the Road

Attendees at PHA on the Road in Seattle on June 4 wrote 241 letters to their Members of Congress to request co-sponsorship of the Tom Lantos Pulmonary Hypertension Research and Education Act and build support in Congress for PH research and awareness. » Learn more

Get Smart


Parents Telephone Support Group Call: Prepare for Summer PHun!

Thursday, June 16, 8:30 p.m. ET/5:30 p.m. PT
Guest Facilitator: Michelle Calderbank, RN, BSN
Bring your questions and your tips to discuss with other parents of children who have PH. Michelle Calderbank has been a PH Nurse-Coordinator at Children’s Hospital, Colorado, for the past six years. » Learn more

   

PHA on the Road - Minneapolis this Weekend!

PHA will be “on the road” in Minneapolis this Saturday, June 18. Limited on-site registration will be available. You won’t want to miss this FREE education and networking opportunity. » Learn more

   

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, hosted 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

Living Better with PH


Get Organized to Feel Better, Fare Better

Make a list of all your medications, conditions, physicians, and insurance information on a card and keep the card with you at all times. Patients who take the time to get organized have an easier time following their medication regimens, which can alleviate symptoms and lead to improved quality of life. » Learn more about medication management

PH Community Scoop
   

Support Group Leaders Vital to PHA on the Road

The first three PHA on the Road: PH Patients and Families Education Forums of the season in Seattle, St. Louis and Pittsburgh went off without a hitch thanks to the help of many generous support group leaders and others who volunteered and went out of their way to help. » Read more
From the PHA News Desk
    PHers at district visit

Participate in the 2012 International PH Conference Theme Contest!

Help PHA determine the theme for our 10th International PH Conference and Scientific Sessions taking place June 22-24, 2012, in Orlando, Fla. The person who's theme is chosen by the Conference Committee will receive a complimentary registration to Conference. » Learn more
Medical Community Bulletin


Submit a Research or Case Study Abstract for PHPN Symposium!

The deadline to submit abstracts for poster presentation at the PH Professional Network Symposium has been extended to July 25, 2011. Case studies are welcome. We have resources and guidelines available on how to format your abstract, which apply to both research and case study abstracts. » Learn more
     

PHA Preceptorship in NYC Educates 60 Medical Professionals

New York City was the venue for a PHA Preceptorship Program on June 3 with 60 medical professionals in attendance. The program offered direct instruction on state-of-the-art PAH diagnosis and management for physicians and other health professionals who help care for patients with PAH. » Read more
   

Gilead Sciences Research Scholars Program in PH

This program provides financial support to three junior faculty researchers for a two-year period with the goal of enhancing understanding of PAH. Each award is funded up to $130,000. Application deadline is August 5, 2011. » Learn more
   

Actelion Awards Grants for Research in PAH

Actelion recently awarded grants to four 2011 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)
Also of Interest


health insurance

High Risk Pools Become More Affordable, More Accessible

Newly announced regulations will make it easier for people with PH and other serious health conditions to access and afford the Pre-Existing Condition Insurance Plan, the federally mandated series of state health plans designed to provide coverage for patients with pre-existing health conditions. » Get the details

   

7 Ways to Get Involved During Scleroderma Awareness Month 

June is Scleroderma Awareness Month! Get started as an advocate by reading this list of ideas from the Scleroderma Foundation to help you raise awareness of this chronic connective tissue disease that frequently leads to pulmonary hypertension. » Read more

PH News Headlines


» Gebhardt Rides with a Purpose

» Erie Woman Battles Lung, Heart Ailment

» Inaugural Race Against Pulmonary Hypertension 5K to Raise Awareness for Mysterious Respiratory Disease

» No Diet Pill Guaranteed Safe, and Many Have Adverse Effects

» The Opt Out Organ Donation System is Back on the Agenda in Australia

» Eagles (U.K.) Fans Complete Charity Walk

» More News

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Upcoming Events

June 18, 2011
Minneapolis - PHA on the Road: PH Patients and Families Education Forum
Minneapolis, Minn.

June 18, 2011
Miles for Mallory PHamily PHun Walk
Minneapolis, Minn.

June 25, 2011
Race Against Pulmonary Hypertension - North Carolina
Durham, N.C.


» Go to the Events Calendar

Video Spotlight

PH Professional Network

Watch this video to find out how PH Professional Network can enhance knowledge and understanding of PH for allied health professionals. Patients, share this video with your medical professionals.

Generation Hope Blog

In Honor of Our Lives


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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.