PHA News
In This Issue
Free Update on PH Treatments
PHA's "Exceptional" Fiscal Practices Recognized
Find a PH-Treating Pediatrician
Pre-Conference Registration Closes June 9
Conference Fashion Show Needs Adult Volunteers
PHA Signs Coalition Letter Urging Rapic Elimination of All Lifetime Caps
Medical Education is Coming to Your Area
PH in the News
Quick Links
Donate Now
 
Sustainers Circle - Monthly Gift
Upcoming Events
Newly Diagnosed? What You Need to Know
 May 20, 2010
webinar
 
Audacity: Fundraiser and Silent Auction
May 21, 2010
Jamaica, N.Y.
 
Inaugural Southwest Virginia Funwalk for PH
May 22, 2010
Radford, Va.
 
Telephone Support Group Meeting for Parents
May 27, 2010
telephone
 
PH Treatments: What's on the Horizon
May 28, 2010
webinar
 
International Conference on Pulmonary Circulation
June 2-5, 2010
Prague, Czech Republic
 
Race 2 Cure PH - The Taylor Caffrey Memorial 5K Run/Walk
June 5, 2010
Anaheim Hills, Calif.
 
 Asociacion Nacional de Hipertension Pulmonar: Annual Member Meeting
June 11-13, 2010
Marina D'or, Spain
 
It's All PHun & Games
June 20, 2010
Westminster, Colo.
 
PHA's 9th International PH Conference and Scientific Sessions
June 25-27, 2010
Orange County, Calif.
 
Swing 4 the Cure - Wojo PH Golf Classic
June 28, 2010
Tustin, Calif.
 
8th Annual JFK Tower Golf Tournament
June 28, 2010
White Plains, N.Y.
Vol 11/Number 10May 14, 2010
PHA logoPHANews Editor - Sally Maddox
skshmaddox@yahoo.com
Contributing Editors - PHA staff
 
Reaching over 6,500 subscribers
www.PHAssociation.org

Don't Miss Out on PHA News!
>> We need your contact information

PHA is transitioning to a new email service, which requires that we have your first and last names in addition to your email address. If we do not have this information, we will no longer be able to send you PHANews and other PHA electronic publications. If you have created a site account on our new website we have the information we need. (Update your email preferences)
 
If you have not registered for our new site, go to our Sign In page and click on the "New User Registration" form link under the sign in form. It's quick and easy and will ensure we have the information we need so that you continue to receive vital email communications from PHA.
FREE UPDATE ON PH TREATMENTS WITH DR. IVAN ROBBINS
PH Treatments: What's on the Horizon
Friday, May 28, 3:00 p.m. ET
Webinar - web login AND phone call
 
Dr. Ivan RobbinsJoin Dr. Ivan Robbins of Vanderbilt University for an update on current clinical trials and PH treatments currently in development, followed by Q & A. An Internet connection and telephone are necessary for participation.
 
 
Also, coming up on May 20...
 
PHA's monthly e-Learning Events are made possible through an unrestricted educational grant from Pfizer Inc.
PHA'S "EXCEPTIONAL" FISCAL PRACTICES RECOGNIZED
Charity Navigator Four Star CharityPHA has done it again! For the seventh consecutive year, PHA has received Charity Navigator's 4-star rating, the highest designation conferred by the leading charity evaluator in America. According to Charity Navigator President Ken Berger, PHA is one of only 2% of charities that have received this "exceptional" recognition over this period of time, indicating that PHA "consistently executes its mission in a fiscally responsible way, and outperforms most other charities in America."
 
FINDING A PH-TREATING PEDIATRICIAN JUST GOT EASIER

Pediatric pulmonary hypertension specialists are now easier to locate than ever before thanks to PHA's new online listing of pediatric PH programs. Each of the doctors listed is a member of PH Clinicians and Researchers (PHCR), PHA's professional network for PH-treating physicians and researchers.

 
Visit PHA's Parents web section or contact Emma Bonanomi at Outreach@PHAssociation.org for more information about PHA's services for parents and children.
 
Join us for PHA's new Parents Monthly Telephone Support Group Meetings starting May 27. Learn more
PRE-CONFERENCE REGISTRATION CLOSES JUNE 9
9th International PH Conference and Scientific Sessions, Riding the Wave to a Cure, Garden Grove, California, USA, June 25-27, 2010
 
Can you believe there is less than one month left to pre-register for PHA's 9th International PH and Scientific Sessions?  Pre-Conference registration closes June 9 at 3:00 p.m. ET. Don't miss your chance to experience this life-changing event providing camaraderie, tools for empowerment and over 40 educational sessions presented by the leading experts in the PH field. 
 
 
Hyatt Regency Orange CountyPlease note that onsite registration will be available but we can better prepare for your attendance if you register in advance. Plus, you'll save time at registration!
 
Hotel Reminder
Don't forget to book your hotel accommodations directly with the Hyatt Regency Orange County or visit our hotel information page for more details. The PHA Conference Room-Share/Ride-Share Discussion Board is also available if you are looking for a roommate to share the cost of a hotel room or carpool with.
CONFERENCE FASHION SHOW NEEDS ADULT VOLUNTEERS
PHer walking the catwalk at Conference fashion showThe PH Fashion Show, one of the most popular events at Conference, needs adult volunteers to model the unique ways they dress to hide or show-off their pumps and oxygen tanks. This year, the fashion show will be a part of the Saturday evening program A Seat at the Kitchen Table: Founders' Dinner. 
 
To volunteer to walk the catwalk, contact Jillian at Jillian@PHAssociation.org or call 301-565-3004 x767.
PHA SIGNS COALITION LETTER URGING RAPID ELIMINATION OF ALL LIFETIME CAPS
PHA united with other Raise the Cap Coalition members last week in signing onto a letter to Department of Health and Human Services Secretary Kathleen Sebelius, encouraging her to ensure that insurance companies completely eliminate lifetime caps as soon as possible.
 
Come September 23, 2010, health insurance companies will be required to comply with a few immediate reforms as a result of the recent healthcare reform law (Patient Protection and Affordable Care Act). Although one of these provisions includes the elimination of lifetime caps, there is growing concern that grandfathered plans - those that were effective before the passage of healthcare reform on March 23 - may not have to make changes until the next plan year due to differing interpretations of the law.
 
MEDICAL EDUCATION IS COMING TO YOUR AREA
Mark Your Calendar for These Upcoming Building Medical Education in PH Event for Medical Professionals
 
May 22, 2010 - Oak Lawn, Ill.
Advocate Christ Medical Center
Clinical Management of PAH - State of the Art
This FREE symposium is targeted to all physicians, pulmonologists, cardiologists, rheumatologists, internists and family medicine practitioners and will include presentations on WHO Classifications, treatment, multidisciplinary team management and case studies with questions and answer segments. For more information view the brochure (PDF), contact Heba Ghouleh at hebaghouleh@yahoo.com or call 205-630-9414 to register.
 
June 3, 2010 - East Haddam, Conn.
Yale School of Medicine
4th Annual Pulmonary Hypertension Symposium: Updates on Classification and Therapies
This symposium, designed for physicians, pharmacists, nurse practitioners, physicians assistants and fellows will explain the subtle but significant modifications in classification suggested at the 4th World Symposium on PH at Dana Point, assess the eight current FDA approved therapies and identify the seven pending treatment targets for PH. For more information view the brochure (PDF), register online or contact the Center for Continuing Medical Education at 203-785-4578.
RESEARCH GRANT OPPORTUNITY FOR YOUNG INVESTIGATORS
test tubesPfizer has announced the 2010 ASPIRE Young Investigator Awards in Pulmonary Vascular Disease Research. The program is designed to support young investigators in pulmonary vascular disease as they aim to translate basic science or clinical research into advances in the understanding of pulmonary vascular disease, treatments, or enhanced patient care.
 
Pfizer is funding a minimum of 4 awards up to $100,000 USD/CDN each for one year to conduct basic science, translational or clinical research generating data that will help advance the science of pulmonary vascular diseases. The application deadline is June 30.
 
PH in the NewsPH IN THE NEWS
Is There a Viral Cause for Idiopathic Pulmonary Arterial Hypertension?
(Aetiology) - This article points to some of the inconclusive evidence that human herpesvirus-8 (HHV-8) may cause pulmonary arterial hypertension (PAH). Read article 
 
Pulmonary Hypertension Video Highlighted on National Journal Website   
A few weeks ago Donna Pederson, a 24 year old PH patient and nurse, PHA's good friend Congressman Kevin Brady, and PHA President Rino Aldrighetti had a video interview with the National Journal. Their video publications are available to all Capitol Hill offices (and heavily trafficked by them), as well as to other subscribers. Read more and watch video on Rino's blog 
 
Pfizer Enters Into Agreement With Ergonex Pharma to Acquire Investigational Treatment for Pulmonary Arterial Hypertension  
(PR Newswire) - Pfizer Inc. and Ergonex Pharma GmbH announced that they have entered into an agreement under which Pfizer will acquire terguride, which is in development as a potential treatment for pulmonary arterial hypertension. Under the terms of the agreement, Pfizer will support the completion of the ongoing Phase 2 trial for terguride and will have exclusive worldwide rights excluding Japan to commercialize it for the treatment of PAH. Read press release 
 
High-Altitude Research Advances Low-Altitude Medicine for Pulmonary Hypertension and Pulmonary Edema  
(EurekAlert!) Philadelphia, Penn. - High altitude medicine is a "natural research laboratory" for the study of cardiovascular physiology and pathophysiology. An international group of leading authorities has been assembled to contribute to a special issue of Progress in Cardiovascular Diseases dedicated to high-altitude medicine and novel insights into disease mechanisms provided by high-altitude research. Read full press release | See also Mount Kilimanjaro Climb Became Breathless Adventure for more news on PHA's Path to a Cure climbers
 

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

801 Roeder Road, Ste. 1000, Silver Spring, MD 20910   Patient-to-Patient Support Line: 1-800-748-7274
Webmaster@PHAssociation.org
    Privacy Policy   Virtual Tour of Website    Provide Feedback & Report Bugs

Designed by Matrix Group International, Inc.® | © 2014 Pulmonary Hypertension Association. All Rights Reserved.

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.