February 9, 2011



PHA News, Pulmonary Hypertension Association, Empowered by hope
Latest Blog Post

Busy Day in Greater Washington...

Today was supposed to be a big ice storm in Washington, D.C., but the temperature held above freezing because we had a lot going on outside the office. » Read more

What's In This Issue

» Spotlight On... Caregiver Love
» Get Smart
» Website Discoveries
» PH Community Scoop

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

Spotlight On...

This Valentine's Day, PHers Celebrate Their Caregivers

PHA asked PH patients to tell us about their caregivers, and PHers from around the world emailed in to tell us about the husbands, wives and children who help support them every day. » Read some of their stories

Get Smart

State of PHA: Annual Update from PHA President

Wednesday, Feb. 23, 2:00 p.m. ET, Webinar
Join PHA’s President, Rino Aldrighetti, as he recaps the accomplishments of PHA and the PH community in 2010 and looks ahead toward what we can achieve in 2011. » Register now


Parent Support Group Call: Travel Tips

Thursday, Feb. 17, 8:30 p.m. ET/5:30 p.m. PT
Call in to share tips for family travel with PH. This conversation will be open for one hour; join us for as long as you’d like. Dial toll-free from the U.S. or Canada: 1-866-740-1260. When prompted, enter access code: 5653004. » Learn more


PHA Classroom: New Recordings!

 Even in bad weather, class is still in session! New recorded sessions from our 9th International PH Conference, as well recordings from recent webinars, are now available. Topics range from PH traveling tips to updates on PH treatments. Additional sessions coming soon! » Learn more
Website Discoveries

Things I Found by Kathryn Frix: PHA Mentors

Remember Cheers? "Sometimes you want to go where everybody knows your name." But sometimes you are "frustrated, tired and cranky!!!" as one of our new community members said. And sometimes you are puzzled, anxious and unsure. » Read more


Winter Tips: Stay Warm in the Cold

We updated our online "Winter Tips" with new ideas from support group leaders across the nation. Check out these tips (PDF) and visit our entire section on Climate and PH.

PH Community Scoop

International Partners Write to Support Ariz. Transplant Funding

A decade ago, PHA Australia requested our help in trying to get their first PH-treating drug approved. Today, in response to recent legislation in Arizona, PHA has been honored to have our international partners return that favor and write in support of the U.S. community. » Read more


Considering Transplant? Have You Received a Transplant?

PHA’s Transplant email group brings together patients considering transplantation with transplant survivors. To find out more about this group, contact Meghan Finney at or 301-565-3004 x744 or join the Transplant email group now.
From the PHA News Desk

Stay Connected with PHA's New Coverage Connection

Curious about changes in healthcare? PHA now provides regular insurance updates through our Coverage Connection web page and email. Read the latest on PH-related insurance developments, find out what other patients are saying, and then leave a comment about your insurance experience. View the latest updates | Sign up for email updates

PHers Lock in Support for the PH Research Act

PH patients Conchita Watson and Georgia Milosevic met with Representative Chris Van Hollen (D-MD) last week. After hearing about the challenges of PH, the Congressman agreed to co-sponsor the Tom Lantos Pulmonary Hypertension Research and Education Act of 2011 when it is introduced. » Learn more

Medical Community Bulletin

Buiding Medical Education in PH Event in California

The 4th International Neonatal and Childhood Pulmonary Vascular Disease Conference will take place on Friday, March 11, in San Francisco. This event brings together international experts to explore the current understanding of the basic pathobiology and therapies for neonatal, pediatric and adult pulmonary vascular diseases. » Learn more


PH in Systemic Sclerosis Recording

If you missed the PHA Online University live webinar with Virginia Steen, MD, discussing “PH in Systemic Sclerosis” – you’re in luck! A recording of this webinar is now available and eligible for FREE CME/CEU credits. » View recording

Also of Interest

Make Rare Diseases Common Knowledge!

There are 7,000 rare diseases but only 400 rare disease treatments. » Learn more and spread the word during Rare Disease Day on February 28


Advocate for HHT Research on Capitol Hill!

Hereditary Hemorrhagic Telangiectasia (HHT) is a blood vessel disorder that sometimes leads to pulmonary hypertension. On February 16, the HHT Foundation invites patients, family and friends to Washington, D.C., to educate their elected officials about HHT. » Learn more

PH News Headlines

» Youth Awaiting Heart/Lung Transplant

» STS: Lung Emboli Surgery Safer

» Effect of Chemokine Receptor CXCR4 on Hypoxia-Induced Pulmonary Hypertension and Vascular Remodeling in Rats

» Bikers Help Woman in Need of Lung Transplant

» What Works for Raynaud's Phenomenon with Ischemic Finger

» More News

Connect with PHA

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

Upcoming Events

Feb. 17, 2011
PHA Parents Telephone Support Group

Feb. 25-26, 2011
10th Annual British Columbia PH Society Symposium
Vancouver, BC

March 11, 2011
4th International Conference Neonatal and Childhood Pulmonary Vascular Disease
San Francisco, Calif.

» Go to the Events Calendar

Conference Video

PHA's Debbie Castro offers tips for talking with the media. 

Watch as PHA's Debbie Castro offers her tips for sharing your story with the media. Debbie recently appeared on The Kojo Nnamdi Show, a local Washington, D.C., radio show on NPR to talk about PH.

Quick Poll Results from Last Week

What's your biggest challenge to healthy eating?

41.7% - Sodium
8.3% - Calories
0% - Will power
50% - All of the above

Look for a new question in a future issue!

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.