PHA News
In This Issue
Countdown to PH Resource Network Symposium
New PHAware Campaign Tools Make Raising Awareness Easier than Ever
Back to School with PH? Check Out the School Resource Handbook for Parents!
New Inroads Made by Support Groups
International Seed Grant Awarded to Abraf Brazil
What is PHA's Position on Healthcare Reform?
Read the Summer Issue of Advances in PH
PH in the News
Upcoming Education Events for Patients and Medical Professionals
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Second Annual Painting a Stroke of PHenomenal Hope
September 12, 2009
Okla.
 
Support Group 101: How to Start a Support Group
September 17, 2009
Webinar
 
CAPHS Third Annual Let's Walk & Roll Event
September 19, 2009
Ohio

Third Annual Maine "Swinging for a Cure" Golf Tournament and PH Forum
September 19, 2009
Maine
 
2009 N.C. Cure PH Golf Tournament, Raffle and Silent Auction
September 26, 2009
N.C.
Vol 10/Number 18 September 4, 2009
PHA logoPHANews Editor - Sally Maddox
skshmaddox@yahoo.com
Contributing Editors - PHA staff
 
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COUNTDOWN TO PH RESOURCE NETWORK SYMPOSIUM - SEPTEMBER 24-26

Leading Progress, Creating Partnerships: Empowering the Interdisciplinary PH Team

 
Medical ProsThe PH Resource Network Symposium Leading Progress, Creating Partnerships: Empowering the Interdisciplinary PH Team is fast approaching! This is the final PHANews reminder to register for Symposium and take advantage of the complimentary scholarships available for PH-treating allied health professionals. Hurry, there are only a few scholarships left!

Here are some important dates to mark off on your countdown calendar to Symposium:

September 17  Audience

  • Last Day to Register or Cancel for Advocacy Day
  • Last Day to Cancel Symposium Registration

September 21  

  • Last Day to Register Online (Registration will be taken by mail, fax and day-of onsite)

Visit the Symposium website for registration and cancelation details or email Symposium@PHAssocation.org

Also, don't forget you need to be a current PH Resource Network member to attend Symposium! To check your membership status contact 301-565-3004 x761 or phrn@PHAssociation.org. PHA will accept the $35 membership dues fee at the Symposium registration desk.

NEW PHAWARE CAMPAIGN TOOLS MAKE RAISING AWARENESS EASIER THAN EVER
Use your story to fight back against PH
 
PHAware LogoWhen it comes to raising awareness of PH through the media, every success is built upon the work of the growing number of PHers who have already told their stories to news outlets. Now, with updated PHAware Campaign materials, raising awareness is easier than ever:
  • The updated PHAware Campaign Media Guide now features expanded and up-to-date information on how to raise awareness through a variety of news outlets.
  • The brand new Media Guide for PH Support Groups and Media Guide for Medical Professionals help these important groups reach out to the media.
  • The PSA Toolkit has everything you need to begin raising awareness through radio public service announcements - including a CD with four pre-recorded PSAs!
Contact Katie to order these new materials and become a part of the PHAware Campaign at awareness@PHAssociation.org or 301-565-3004 x749.
BACK TO SCHOOL WITH PH? CHECK OUT THE SCHOOL RESOURCE HANDBOOK FOR PARENTS!

 
To help reduce the anxiety of back-to-school season for PH families, PHA offers an electronic handbook addressing common concerns. It provides template letters, an emergency information sheet and informational materials Back to Schoolabout PH and medications to educate and improve communication with your child's school. Elements of the guide can be downloaded and customized in Word to personalize these materials to your child's specific needs.
 
This resource was developed in 2008 by PHA's Pediatric Parents working group and PH Resource Network Education Committee.
NEW INROADS MADE BY SUPPORT GROUPS
 
Athens, Tenn. Group Draws Press Coverage about PH Through Participation at Area Health Fairs
 
Athens GroupThe Athens, Tenn. Support Group participated in two local health fairs recently. This was a great opportunity to exhibit and raise awareness about a rare disease. The local paper picked up the story with an article featuring support group leader Margaret Goodwin. The article talks about pulmonary hypertension and directs readers to the PHA website for more information. Kudos to the Athens group for raising awareness about PH in their community! Read article

Washington, D.C. Holds Their First Meeting

DC GroupThe first Washington, D.C. PH Support Group met last week. Nine patients and one caregiver turned out to a very urban meeting location. Patients usually bring caregivers with them, especially to first meetings, but these urbanite Washingtonians are accustomed to their independence. Due to the close proximity of the PHA office, PHA President Rino Aldrighetti was invited to speak at the inaugural meeting. Thanks to the outreach efforts of Dr. Virginia Steen of Georgetown University Hospital, we had three patients with both PH and Scleroderma in attendance. Welcome to the PHA community, D.C. Support Group!
 
INTERNATIONAL SEED GRANT AWARDED TO ABRAF BRAZIL
PH InternationalPHA is pleased to congratulate ABRAF Brazil on their recent $10,000 International Seed Grant award. Since its founding in 2006, ABRAF has been effectively and aggressively helping patients understand and combat PH. Brazil is a large country with significant disparities in resources from region to region. 
 
The group will use a portion of the funds to create valuable informational resources in Portuguese and to prepare for their Second Annual Patients Meeting in November.
 
PHA's International Seed Grant program offers developing associations the opportunity to enhance their work by supporting sustainable projects and proposals. Six groups have been awarded with seed grants to date, including groups in Mexico, Israel, Canada, Austria, and Japan.
 
Funds are still available! If you are involved in a group outside the U.S., visit  PHA's website to learn how you could be awarded up to $10,000 USD toward the development of your organization
WHAT IS PHA'S POSITION ON HEALTHCARE REFORM?

PHA has published our Statement of Principles regarding healthcare reform, with an overarching goal to ensure that every American has healthcare that is universal, continuous (portable), affordable, sustainable and accessible. Visit our Advocacy Action Center to read the complete statement of principles and to check for insurance updates. 
 
As always, we welcome feedback regarding healthcare reform and encourage you to email us at insurance@PHAssociation.org with your thoughts.
READ THE SUMMER ISSUE OF ADVANCES IN PH

Cover of Advances in Pulmonary Hypertension JournalThe Summer 2009 issue of the Advances in Pulmonary Hypertension journal is now online! The topic for this issue is "New Therapeutic Approaches in PAH" with articles on near-term novel therapies, recent therapeutic trials and the development of oral prostacyclin analogs for the treatment of PAH. The journal includes a FREE AMA accredited CME section.
 
PH in the NewsPH IN THE NEWS
 
 
New European Guidelines on Pulmonary Hypertension Provide New 6-Group Clinical Definition
(EurekAlert!) Barcelona, Spain - The new 2009 Guidelines provide a new clinical classification of pulmonary hypertension which identifies six different clinical groups. However, whatever the underlying causative mechanism, pulmonary hypertension is characterized by a poor prognosis. Read article
 
Actelion Launches Increased Strength Formulation of Ventavis (Iloprost) for PAH in the United States
(Reuters) - Actelion Pharmaceuticals US, Inc., announced the first commercial sales of a new 20 microgram per milliliter (mcg/mL) formulation of Ventavis(R), for the treatment of New York Heart Association Class III and IV pulmonary arterial hypertension (PAH). Read article

Actelion Gets U.S. Approval for Wider Use of Tracleer
(Reuters India) - Actelion said its Tracleer drug had been granted approval for mildly symptomatic pulmonary arterial hypertension (PAH). The drug is already approved for patients with advanced, or functional class III and IV PAH. Actelion said it was working with authorities worldwide to expand the label to patients with functional class II PAH. Read article

Marton Gran Tells of Battle with Pulmonary Hypertension
(gazettelive.co.uk) United Kingdom - Susan Horrocks has a condition so rare most people have never heard of it. But it's a condition that, when she was diagnosed in 2006, left her so exhausted she was barely able to walk from one room to the next. "Until I was diagnosed I had never heard of the condition," said Susan. Read article

UPCOMING EDUCATION EVENTS FOR PATIENTS & MEDICAL PROFESSIONALS


 
Medical Professionals Act Quickly: Registration Deadline Approaching  for Heart Failure & PH Event
September 18, 2009 - Pittsburgh, Penn.
West Penn Allegheny Health System

2009 Innovations in Heart Failure and Pulmonary Hypertension
Earn up to 8.5 AMA PRA Category 1 Credits at this exciting educational opportunity highlighting innovations in heart failure and pulmonary hypertension. This course will provide a review of the latest innovations in the management of heart failure, including novel surgical treatments and new insights into the pathogenesis and treatment strategies for PH patients. Registration closes on September 11, 2009! For additional information visit the site online, email rnewman@wpahs.org or call 412-359.4952.
 
Patient and Medical Professional Symposium in October
October 2-3, 2009 - Kansas City, MO
Washington University & Kansas University Medical Center

MidWest Pulmonary Vascular Symposium
This symposium is a unique two day event for both patients and medical professionals. Day one is focused on patients, and includes both medical and non-medical informational sessions, as well as a chance for networking. Day two is aimed at enhancing medical professionals' knowledge of diagnosis and treatment options for PH. Visit their site online or call 913-588-4499.

Medical Professionals Earn 13 CME Credits for FREE at Pittsburgh Event 
October 9-10, 2009 - Pittsburgh, Penn.
University of Pittsburgh Medical Center

Pittsburgh International Lung Conference: Spotlight on Pulmonary Hypertension and Pulmonary Vascular Biology
Day one of the conference will be dedicated to the clinical aspects of pulmonary vascular disease with the afternoon featuring a spotlight on pulmonary hypertension diagnosis and management presented by leaders in the pulmonary hypertension field. The second day will focus on the latest translational research in pulmonary vascular biology. Registration for this event is free, and up to 13 CME credits are available for participation. For more information, visit the site online or contact Valerie Neff-Rasmussen at valerie.strategic@gmail.com.

Visit PHA's Medical Events calendar for a Building Medical Education in PH partnership event near you.  To partner with PHA through Building Medical Education in PH for your next CME event, contact Emily Koenig at BME@PHAssociation.org
or 301-565-3004 x776.

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Learn eight ways to make a bequest to the people and causes you care about. Including a bequest in your will or trust to individuals or charitable organizations such as ours may be the best way to make a meaningful gift in the future. Plus, it allows you to change your mind at any time. Check out this brochure and many more free resources on PHA's Planned Giving website.

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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.