April 18, 2012

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

May 5, 2012: First World PH Day

In 2010, Juan Fuertes and Irene Delgado of the Asociación Nacional de Hipertensión Pulmonar (ANHP) began a quest.They believed that it was time for the world to recognize pulmonary hypertension – and they believed that a World PH Day was the way to do it. Like any new idea, at first there was skepticism but they continued to push forward … and soon people began to understand the possibilities. » Read more

What's In This Issue
   

» Spotlight On... Lung Allocation
» Get Smart
» Website Discoveries
» PH Community Scoop

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

Spotlight On...
   

Proposed Lung Allocation Changes Open for 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

Get Smart
    pills

PH Treatments Recording Now Available

A recording of the blockbuster webinar “PH Treatments: What’s on the Horizon?” is now available in PHA Classroom. This recording features Michael McGoon, MD, from Mayo Clinic discussing the available treatments for PH and the treatments that are currently in the pipeline. » View recording

    Special Events

Peer to Peer Fundraising Webinar

Thursday, April 19, 3:00 p.m. ET/12:00 p.m. PT
This webinar will feature guest speaker Jeff Love from FirstGiving. Jeff will provide tips and resources to maximize your fundraising and attendance at your special event. We’ll also share tips for connecting with your personal networks offline. » Register now

Website Discoveries
    PHA flame image

Things I Found by Kathryn Frix: Notes of Thanks and Remembrance

This week I found something on the PHA website that is very near and dear to my heart: Notes of Thanks and Remembrance, published in PHA's International PH Conference and Scientific Sessions Program Book. In spring of 2010 I received an email from a young woman who was at the time living so far away from her dad, she would not be able to attend Conference with him. » Read more

    Caregivers

NEW Resources for Caregivers!

The most effective and supportive caregivers are those who also take time to take care of themselves. Check out these new resources – developed by PHA staff and experts in the field – to help caregivers better understand how caring for someone with PH can affect them: their emotional health, relationships and overall outlook. » Read more

PH Community Scoop
   

Parents Telephone Support Group: Talking about PH ... Outside the Family

Thursday, April 19, 8:30 p.m. ET/5:30 p.m. PT
Explaining your child’s PH to neighbors, coaches and other adults outside the family can be frustrating but sometimes necessary. Call in to discuss what, when and how to discuss your child’s PH. » Learn more

   

Patients Telephone Support Group: No Support Group in Town? Pick Up the Phone!

Thursday, April 26, 8:00 p.m. ET/5:00 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 monthly patient telephone support group makes it easy to participate in a support group regardless of your work hours, distance or health concerns. » Learn more

   

Ask Your Transplant Questions and Share Your Story!

PHA's Transplant email group brings together patients considering transplantation, transplant survivors and patients or family members curious about the transplantation process. To find out more about this group, contact Meghan Finney at Transplant@PHAssociation.org or join the Transplant email group now.

From the PHA News Desk
    PHA Daily Beat

Introducing the PHA Daily Beat: News for Your Health and Heart

The What’s New in PH feed has gotten a makeover and a new name to better reflect the vibrancy of the PH community through news, stories, events, educational information and opportunities for involvement. You can now subscribe to receive content as it is posted via email and RSS feed. » Check it out

    Pulmonary Hypertension  Association launches a new website for Conference.

PHA's Conference: Truly International!

Close to 700 people have already registered for PHA’s 10th International PH Conference taking place June 22-24 in Orlando, Fla. These 700 people represent 22 countries from around the world, showing how truly international this event will be! We hope you will join us in Orlando. Registration is still open, but don’t delay! » Learn more

    Doug Taylor

New Patient/Family Led Sessions to Look Forward to at Conference

One of the many highlights of each Conference are the Patient/Family Led Sessions. These sessions provide an opportunity for PH patients and caregivers to learn from one another. Among the new offerings this year are work and PH, college and PH, and two new sessions for parents. » Read more

    Roving Reporter

Conference Roving Reporter Contest: One Month to Deadline!

PHA is looking for four reporters ages 13 - 19 who will be attending PHA’s 10th International PH Conference and are eager to cover and write an article on an assigned Conference topic for Table Talk, the daily Conference newsletter. Applications due May 15! » Apply now

Medical Community Bulletin
   

Webinar: 17-Beta Estradiol Attenuates Hypoxic PH via Estrogen Receptor-mediated Effects

Thursday, May 10, 2:00 p.m. ET/11:00 a.m. PT
In this webinar, Tim Lahm, MD, from Roudenbush VA Medical Center in Indianapolis, Ind., discusses his recent research involving 17-Beta Estradiol and the role it plays in tempering hypoxic pulmonary hypertension. » Register now

Also of Interest
    Social Security Administration

Social Security Benefits and Returning to Work

Wednesday, April 25, 3:00 p.m. ET/12:00 p.m. PT
Are you receiving Social Security benefits but hoping to return to work? Tune in to a free webinar to learn about the Social Security Administration’s Ticket-to-Work and Work Incentives programs. » Learn more

PH News Headlines
   

» Five Banned or Discontinued Appetite Suppressants

» Long Wait for Diagnosis

» Former Miss Scotland Finalist Launches Fashion Show in Memory of Aunt, a PH Patient

» More News

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Upcoming Events

April 28, 2012
Scramble for a Cure
Las Vegas, Nev.

April 28, 2012
2nd Annual Walk 2 Cure PH: The Ellie Godina Memorial Walk
Euclid, Ohio

April 28, 2012
2012 N.C. Cure PH Golf Tournament
Mocksville, N.C.

» Go to the Events Calendar

Video Spotlight

PHA Email Groups

PHA's email groups are a place to connect with other PHers who share similar experiences. In these groups you will find a place to share support, advice, strategies, and a place to learn to thrive, not just survive, with PH. » View this video to learn more

National Call-In Day

In Honor of Our Lives

 
 

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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.