February 22, 2012

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

Bruno Kopp: Leader, Hero, Friend

We still lose too many to this disease . . . and we recently lost another: Bruno Kopp, the leader of the German PH association, PHeV. He founded the organization in 1996 for the same reason that PHA's founders began ours . . . to help end isolation. » Read more

What's In This Issue

» Spotlight On... Outstanding Member Awards
» Get Smart
» Website Discoveries
» PH Community Scoop

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

Spotlight On...
    Outstanding Member Awards

Outstanding Member Awards

At every Conference, we recognize the unique contributions of select individuals (patients, caregivers and medical professionals) through the PHA Outstanding Member Awards. These awards are chosen by YOU — members of our community — by nominating deserving individuals. » Submit your nomination today!

Get Smart
    Creativity and Healing Through Blogging

Creativity and Healing Through Blogging

Thursday, March 8, 6 p.m. ET/3 p.m. PT
Medical research links creativity to improved health. Join active bloggers Leigh McGowan and Colleen Schnell as they discuss their experiences with blogging as a form of creative self-expression. Learn blogging tips and find out more about the online PH blogging community. » Register now

    State of PHA – An Annual Update from PHA President Rino Aldrighetti

New Recording Available!

A recording of the recent webinar “State of PHA – An Annual Update from PHA President Rino Aldrighetti” is now available in PHA Classroom. This webinar discusses the current state of PHA, the growth of the PH community and PHA’s recent accomplishments and goals for the new year. » View recording

Website Discoveries
    Pulmonary Hypertension: A Patient's Survival Guide

Things I Found by Kathryn Frix: PHA’s Glossary of PH Terms

Today I spent some quality time with a few hundred of my closest PHriends! I heard so many different conversations, but at times they seemed like a whole different language! I heard, "Next week I tackle the echo and once the achy joints subside again, I'm kicking the 6mw in the butt." » Read more

PH Community Scoop
    Just for Teens!

Just for Teens!

PHA has just launched a brand new section of its website especially for teens with PH. PH Teens features articles on talking to peers and teachers about PH, planning for college, and ways that teens are raising awareness. » Check it out

    Home Cooking for the Heart

Home Cooking for the Heart

PHA extends a special shout-out to the Port Charlotte (Fla.) PH Support Group for hosting a spaghetti dinner on Jan. 14. Thanks goes to the Amvets Post 312, who provided space for the gathering, and support group leader Linda Milo and family, who provided their famous Italian cooking. Together, the group served up nearly 70 plates of spaghetti and raised $500 for PHA.

    Telephone Support Group

Participate in PHA's Telephone Support Group

Thursday, Feb. 23, 8 p.m. ET/5 p.m. PT
Want to chat with another patient? Can’t make it out to a local support group meeting? PHA’s telephone support group reaches out to those who can't make it to local meetings, whether because of health, work hours or distance. For more information, contact » Register online!

From the PHA News Desk
    EMS Brochure

In Case of Emergency: New Brochure Provides Life-Saving Information for EMTs

Nobody wants a medical emergency, but just in case, there’s a new brochure you can give to Emergency Medical Technicians (EMTs). PHA’s new Emergency Medical Services Brochure explains how to best provide emergency care for you. Just fill in the blanks with your personal PH treatment information. » Order a free copy

    Charity Navigator

PHA in Top 1% of Rated Charities!

PHA has done it again! For the ninth consecutive year, PHA has received a four-star rating from Charity Navigator, the premier evaluator of charities in the United States. » Learn more 

Medical Community Bulletin
    PHA Online University: New Courses Now Available!

PHA Online University: New Courses Now Available!

Two new courses are now available on PHA Online University – “Congenital Heart Disease in Pulmonary Arterial Hypertension” and “Pulmonary Arterial Hypertension in Systemic Sclerosis: Characteristics and Diagnosis.” Each course offers free CME credits after completion of a post-test and evaluation. » View courses

Also of Interest
    Rare Disease Day briefing on Capitol Hill

Rare Disease Day Event to Highlight PH Research and Treatment

Invite your senators and representatives to learn more about PH and pulmonary fibrosis during a unique Rare Disease Day briefing on Capitol Hill on Feb. 29. If you live in the D.C. area, join us for this free event, which includes a presentation by PHA’s own Dr. Serpil Erzurum. » Learn more and invite your Members of Congress.

    Cookbook for PAH

Get Involved: Cookbook for PAH!

Do you have an original great, low-salt recipe for a delicious dish? Gilead is donating $5 to PHA for every recipe submitted for consideration in a new PAH cookbook. Salads, pasta dishes, breakfast and desserts — your recipe could make the final cut in this new cookbook! Submission deadline: April 15, 2012. » Submit your recipe

PH News Headlines

» Nick Cannon's Health Issue, Pulmonary Embolism Found

» Researchers Uncover New Advancements in Cardiovascular Medicine

» Irish Scientists Find Potential New Treatment for Smoking-Related Diseases, Protein Linked to PH

» Living Proof That Transplants Do Work

» Pulmonary Hypertension Common in Hemodialysis Patients

» Pulmonologist Ghulam Saydain Discusses Pulmonary Hypertension - CBS Detroit

» Tiffany & Co. Providing Trophies for CrawPHish Festival

» Mediator, Deadly Weight-Loss Drug from France, Pulled Off Markets

» More News

Connect with PHA

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Upcoming Events

Feb. 24, 2012
5th Annual California Fish Fry
San Diego, Calif.

Feb. 29, 2012
Rare Disease Day

March 9-10, 2012
5th Neonatal and Childhood Pulmonary Vascular Disease Conference
San Francisco, Calif.

» Go to the Events Calendar

Video Spotlight

Michael Rivera on KRIS-TV in Corpus Christi, Texas

Michael Rivera, a support group leader and caregiver to his wife who has PH, appeared on KRIS-TV to talk about pulmonary hypertension and promote his support group in Corpus Christi, Texas. » View the video

Read this week's Generation Hope blog post “My Experience of Vacationing with Pulmonary Hypertension”
Make it your personal legacy to defeat PH

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.