March 21, 2012

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

Facebook, Timeline and PHA ... A Banner Opportunity

PHA’s Facebook communication has come a long way. Our Facebook page was launched on October 7, 2009, and made 33 fans by the end of that day. Today we have nearly 5,500 fans around the globe. Over the years, it has provided a space for our PH community to learn, advocate and build relationships. » Read more

What's In This Issue
   

» Spotlight On... Conference Advocacy Challenge
» Get Smart
» Website Discoveries
» PH Community Scoop

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

Spotlight On...
    PH community members in front of the U.S. Capitol

Be Counted in the Conference Advocacy Challenge!

Since January, PH community members sent 273 messages to their Members of Congress requesting co-sponsorship of the Tom Lantos Pulmonary Hypertension Research and Education Act. Whether or not you will be at PHA's Conference, each message becomes part of the Advocacy Challenge: From a Kitchen Table to Congress! Find out how you can join the Challenge! » Learn more

Get Smart
    pills

PH Treatments: What's on the Horizon?

Friday, March 23, 2 p.m. ET/11 a.m. PT
It is an exciting time for PAH research. Over the past 17 years, nine PAH therapies have been approved by the FDA. During this webinar, hear from Dr. Michael McGoon of the Mayo Clinic as he discusses the treatments that are currently available and treatments in the pipeline. » Register now

   

Blogging Recording Now Available

A recording of the webinar “Creativity and Healing through Blogging” is now available in PHA Classroom. In this recording, panelists discuss their experiences with blogging and other forms of creative self-expression and offer tips from the PH blogging community. » View recording

Website Discoveries
    Understanding PH DVD

Things I Found by Kathryn Frix: "Empowered by Hope: Understanding PH" Video

I have found a great way for you to help people in your life understand pulmonary hypertension. It was over a dozen years ago, but it is still clear in my mind how I replied when my cousin told me he finally had a diagnosis for his distressing symptoms - pulmonary hypertension. I asked, "What is pulmonary hypertension?" » Read more

PH Community Scoop
    Katie Kroner, PHA staff member, and Nicole Cooper, PH patient, raise PH awareness on Capitol Hill.

Giving PH a Voice on Rare Disease Day

February 29 was Rare Disease Day – a global effort to raise awareness of rare diseases and the need for more research and treatments. PHers joined in the effort by hosting awareness tables, spreading the word on Facebook and even speaking out on Capitol Hill. » Read more

   

PHA's Monthly Patient Telephone Support Group

Thursday, March 22, 8 p.m. ET/5 p.m. PT
Want to chat with another patient? Can't make it to a local support group meeting? A support group is only a phone call away. Our patient telephone support group makes it easy to participate in support groups regardless of your work hours, distance or health concerns. » Learn more

    Ken and Joanne Schmidt

Congratulations, Joanne Schmidt!

Joanne, a PH patient from Long Island, N.Y., was nominated by her husband Ken and won the Dunkin’ Donuts “Show Us Your Heart” contest. » Read the great things Ken said

From the PHA News Desk
    Pulmonary Hypertension  Association launches a new website for Conference.

Conference Early-Bird Registration Closing Soon!

Planning to attend PHA’s 10th International PH Conference and Scientific Sessions? Don’t forget that the discounted Early-Bird Registration rate ends on April 2. Register before the deadline and receive a discount of $25/person off the registration fee. We hope to see you in Orlando! » Learn more and register

    PHA flame image

Honor Those Who've Made a Difference in Your Life

Acknowledge those who have helped you through your PH journey or remember those who have passed with a Note of Thanks and Remembrance printed in the program book for PHA’s 10th International PH Conference and Science Sessions. You don’t have to go to Conference to be able to tell the 1,300 expected attendees who is important to you. Each note is $25 and all proceeds support the Conference Scholarship Fund. » Submit your note today

Medical Community Bulletin
   

Building Medical Education in PH Event in Philadelphia

Saturday, April 14, Philadelphia, Pa.
The Perelman School of Medicine at the University of Pennsylvania will be hosting the annual Alfred P. Fishman Symposium on April 14. This year’s symposium, “Pulmonary Vascular Phenotypes in Research and Clinical Care,” aims to present novel methods of phenotyping patients with pulmonary vascular disease, including genetic, metabolomic and network approaches. » Learn more

Also of Interest
    PH community members lobby with American Association of Respiratory Care members.

PHA and AARC Team Up on Capitol Hill

Recently, PHers joined American Association of Respiratory Care (AARC) members to double our impact on Capitol Hill. We educated elected officials about the need for increased access to respiratory therapists and requested co-sponsorship of the Tom Lantos PH Research and Education Act. Learn more about AARC | Take action on the PH bill

    Disability.gov

Makeover Madness: Disability.gov Gets a New Look

Disability.gov recently launched a newly designed website, making it easier for people with disabilities and their families to find disability services in their communities. The website connects Americans to more than 14,000 resources, including government agencies, academic institutions and nonprofit organizations. » View the site

PH News Headlines
   

» Florida Suspends Doctor Accused of Illegal Stem Cell Therapy

» Differences of Cardiac Output Measurements by Open-circuit Acetylene Uptake in Pulmonary Arterial Hypertension and Chronic Thromboembolic Pulmonary Hypertension: A Cohort Study

» Whittier Woman Receives Miracle and Gives Back

» Annual Shamrock Run Paints Portland Green, Brings Joy to PH Patients and Participants

» Las Vegas Woman Stays Positive While Battling Rare Diseases

» Raynaud's Disease Sufferers Learn to Adapt, Avoid the Cold

» More News

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Upcoming Events

March 23, 2012
PH Treatments: What's on the Horizon?
webinar: online and phone

March 24, 2012
The 2012 Woodlands Crawfish Festival
The Woodlands, Texas

March 24, 2012
Spur a Cure for PH
Phoenix, Ariz.


» Go to the Events Calendar

Read this week's blog post "Importance of a PHriend"

Our Work Place Has a Heart

Table Talk: Wired

 
 

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NORD

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.