April 17, 2013

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

Yes, We Can ... Yes, We Did!

In 2012, the FDA began an initiative to involve patients in the drug development process. It identified 39 potential diseases, of which PAH was one. Through a public process, the candidate diseases grew to 90. Of these 90, only 20 would be chosen for this initiative ... Today, we got the great news that PAH is one of the 20 selected diseases for participation! » Read more

What's In This Issue
   

» Spotlight On... National PH Call-In Day
» 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...
   

April 24 is National PH Call-In Day: Turn Your Members of Congress into PH Advocates!

If you could ask your senators and representative to do something for the PH community, what would it be? On April 24, urge your Members of Congress to fight for more affordable and accessible treatments, more public awareness and more funding for research. Getting involved is easy. » Find out how

Get Smart
    Veggies

Can What You Eat Affect Your Disease State?

April 19, 2 p.m. ET/11 a.m. PT
Presenter: Anna Hemnes, MD

Join Dr. Anna Hemnes for a presentation on the relationship between nutrition and disease, and learn how modifying your lifestyle can improve your disease state. » Register now

     

ATS 7th Annual (Free) Patient Forum

May 18, Philadelphia, Pa.
In conjunction with its International Conference, the American Thoracic Society (ATS) is providing PH patients with an opportunity to learn about the latest in research, clinical trials and clinical care from PH experts. During this interactive meeting, medical leaders, including a pediatric PH specialist, will answer your questions and share their insights in the PH field. » Learn more and register

Living Better with PH
    Teens

Teen Transition Guide Now Available for Young PHers

Researchers recommend that youth with chronic illness begin preparing for their transition to adult healthcare as early as age 12. PHA has released its Teen Transition Guide, designed to help teens take on responsibility for their healthcare and prepare to transition into the adult healthcare system. » Get started

PH Community Scoop
    Virgi Lucero

PHA Outreach to Specialty Pharmacy Improves Patient Care

In February, PHA heard from a PHer who went six days without medication after her insurance provider transitioned her to a new specialty pharmacy. PHA contacted the pharmacy about the situation, and the company has since taken steps to improve patient care. » Learn more

From the PHA News Desk
    PHA flame image

Light a Flame of Hope!

Recognize World PH Day on May 5 by lighting a Flame of Hope. Make a donation in honor or memory of a loved one and show the world we expect a brighter future. Your contribution supports PHA’s annual fund, which provides PHA’s many invaluable programs and services. Be a part of PHA's beacon of hope on World PH Day and light your flame today!

Medical Community Bulletin
   

PH Professional Network Symposium: Registration Open!

Registration for the 2013 PH Professional Network Symposium is now open. PHA is offering a reduced registration fee of $100 for the first 250 PH-treating healthcare professionals who register and who have an active PH Professional Network membership. Don’t miss this opportunity to enroll at a reduced rate! » Register now

    PHA Online University

Pulmonary Hypertension in Schistosomiasis: An Overview

May 1, 1 p.m. ET/10 a.m. PT
Presenter: Ghazwan Butrous, MD

While not a problem for those living in the U.S., schistosomiasis is the third leading endemic parasitic disease in the world. Worldwide 200-300 million individuals are infected. Current evidence shows that infection with schistosomiasis increases the chances of developing PH. The current burden of schistosomiasis means that there may be as many as 15 million people living with schistosomiasis-associated PH. Join us for this webinar on May 1 to learn more. » Register now

Also of Interest
   

Policy Changes will Benefit PHers Awaiting Transplant

Last spring, PH advocates spoke out in support of changes to the lung allocation score (LAS). PHA is celebrating National Donate Life Month (April) with an exciting victory update! » Learn more

PH News Headlines
   

Research & Treatment News
» Bayer's PH Drug Riociguat Granted U.S. FDA Priority Review

» Hypertension in Lung Vessels Often Misdiagnosed

Updates from PHers Around the World
» Heart-Stopping Surgery Cures Woman of Rare Lung DIsease

» Miracle Mum Spreading Word on Transplant Operations

» Jake Beattie's Wishes Come True

» Fighting Pulmonary Hypertension: Chelsea's Radiant Smile Foundation

» More News

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Telephone Support

Parents
April 18, 2013
8:30 p.m. ET/5:30 p.m. PT

Patients
April 25, 2013
8 p.m. ET/5 p.m. PT

Caregivers
May 15, 2013
1:30 p.m. ET/10:30 a.m. PT

Upcoming Events

April 19, 2013
2nd Annual Kayla Rubio Memorial PH Bowl-a-Thon
Wantagh, N.Y.

April 20, 2013
5th Annual Scramble for a Cure
Las Vegas, Nev.

April 27, 2013
Philadelphia's Hope for a Cure Gala
Springfield, Pa.

» Go to the Events Calendar

Generation Hope Blog "Depression & PH"
How to make a better will – Create a will that benefits your family and gives hope to the PH community. Download free resources to learn more.
 
 

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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.