May 30, 2012

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

Research ... A Story, A Call to Action

This blog is about a shift that is dangerous – and unnecessary – for our country. It offers a story and a call to action from the American Thoracic Society. » Read more

What's In This Issue
   

» Spotlight On... Conference Registration Closing
» 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...
    Pulmonary Hypertension  Association launches a new website for Conference.

Online PHA Conference Registration Closes June 8!

More than 1,100 PH community members have already registered for PHA’s 10th International PH Conference and Scientific Sessions taking place June 22-24 in Orlando, Fla. If you haven’t registered yet, you can still take advantage of online registration until Friday, June 8 at 3 p.m. ET. Don’t miss out on this opportunity to join your fellow PH community members! » Register now

Get Smart
   

Patient Telephone Support Group Live from PHA's International PH Conference

Thursday, June 21, 8:00 p.m. ET/5:00 p.m. PT
If you can’t make it to Conference and want to talk to another patient, you’re in luck. For an hour on the Thursday night prior to the kick-off of PHA’s International PH Conference, you can dial in and talk to patients participating in this epic event in Orlando. We want to provide you support, whether you travel to conference or not. » Register now

Contact SupportGroups@
PHAssociation.org
for more information.

Living Better with PH
    Coping Resources

Resources for Coping with PH

Pulmonary hypertension impacts more than a patient's physical well-being. PHA now offers resources that address the emotional aspects of life with PH for newly diagnosed patients, long-term survivors and parents. Coming soon ­-- resources for caregivers and teens. » Learn more

PH Community Scoop
    Support Group Calendar

New Calendar Makes It Easy to Find Support Group Meetings

Find a meeting near you! PHA created a sortable, easy-to-use calendar that can help you find support group meetings going on in your state and across the country. Now it's easier than ever to meet others living with PH and learn more about the disease. » View calendar

   

PHA Thanks Organizer of "Take a Breath for PH - Get Moving for MS"

PHA extends a warm thank you to Melinda Grubich for organizing “Take a Breath for PH – Get Moving for MS,” which was scheduled for May 12 in Dewitt, Mich. This event, held in memory of Melinda’s daughter Mackenzie Jade, who lost her battle with PH in 2009, benefitted both PHA and the National Multiple Sclerosis Society (NMSS). Unfortunately, the event was canceled due to inclement weather, but still managed to raise more than $10,000 toward finding a cure for PH and MS.

From the PHA News Desk
    Sometimes It's PH

Have you seen the PH zebra?

Have you seen the PH zebra? PH is a rare disease with common symptoms – which makes it difficult to diagnose. PHA is ready to raise awareness with doctors who may encounter PH patients to help those patients get diagnosed and treated sooner. Learn more and support all the ways PHA is working to improve the lives of today’s and tomorrow’s PH patients. It's not too late to support PHA's Zebra Campaign!

Medical Community Bulletin
    Dr. Todd Bull

Live Education for Medical Professionals at PHA's 10th International Conference

The medical programming at PHA’s 10th International PH Conference and Scientific Sessions promises to provide an exceptional opportunity to bring the field’s top PH specialists together for education and networking. » Learn more on PHA's Conference blog

Also of Interest
   

Proposed Lung Allocation Changes Open for Public Comment

The United Network of Organ Sharing (UNOS) uses something called the Lung Allocation Score (LAS) to help determine the allocation of organs to patients in need, including PH patients awaiting lung transplant. Currently, the LAS significantly underestimates a PH patient's need for organs, but that could change soon and you can help. » Learn more

PH News Headlines
   

» Inhibition of PBEF is a Possible Therapeutic Target for Pulmonary Hypertension

» ABC News: Pulmonary Hypertension Claims Young Girl's Life

» Remembering Molly: 7-Year-Old Girl Succumbs to Rare Disease, but Not After a Fight, and a Virtual Trip Around the World

» More News

Connect with PHA

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

Upcoming Events

June 1, 2012
PHA Benefit Concert
Mexico, N.Y.

June 2, 2012
3rd Annual Race 2 Cure PH: Taylor Caffrey Memorial 5K
Anaheim Hills, Calif.

June 2, 2012
3rd Annual Bocce for Better Breathing Tournament
Medford, Mass.


» Go to the Events Calendar

Video Spotlight

We look good - PH patients from China

The ISeek PH Cultural Center, a PH organization in China dedicated to raising PH awareness and connecting with more patients living with the disease, has put together a video that shows five women talking about life with PH. Help spread the word about PH and make this video viral! » View the video

Generation Hope Blog: Getting Excited for Conference
Table Talk: Wired
 
 

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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.