PHA News
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Registration Open for PH Resource Network Symposium
PHA Receives 4-star Rating From Charity Navigator
e-Learning Events
A Nickel Can Make a Differnence
Summer 2008 Journal Available
PH in the News
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Upcoming Events
  
1st Annual Scramble For A Cure Golf Tournament
April 18, 2009
Las Vegas, Nev.
 
 
Crawfish and a Cure: 2nd Annual CurePH Bug Boil
April 18, 2009 
 
Bowl PHor Cure
May 23, 2009
Wappingers Falls, N.Y.
Vol 10/Number 5 March 6, 2009
PHA logoPHANews Editor - Sally Maddox
skshmaddox@yahoo.com
Contributing Editors - PHA staff
 
reaching over 6500 subscribers
www.PHAssociation.org
2009 PH RESOURCE NETWORK SYMPOSIUM REGISTRATION NOW OPEN!

 Symposium Banner 
September 24 - 26, 2009
Arlington, Va.
 
This symposium promises to be an extraordinary event for allied health professionals. The program will feature two exciting new additions: an abstract poster session and dual-track programming with topics geared towards the experience level of the attendee. More information on the agenda, including speakers and topics, will be available in late March 2009.
 
Thanks to an unrestricted educational grant from Actelion Pharmaceuticals US Inc., the first 300 PH-treating allied health professionals will receive a complimentary registration.* Visit the registration page for complete details.
 
Allied Health Professionals: Over 15-percent of complimentary registrations are already gone! Don't miss your chance to register for free.*
 
Register online now!
PHA'S FISCAL PRACTICES LAUDED BY CHARITY NAVIGATOR!
Charity Navigator LogoPHA has just received word that for the sixth consecutive year we have received a 4-star rating from Charity Navigator, putting us in the top 2 percent of 5,397 evaluated charities. According to Charity Navigator, which is the premier evaluator of charities in the U.S., this designation indicates that PHA "consistently executes its mission in a fiscally responsible way, and outperforms most other charities in America." Our score places us 18th among 579 currently rated health charities. Ken Berger, Charity Navigator's President & CEO, says that the "exceptional" designation we received, "differentiates the Pulmonary Hypertension Association from its peers and demonstrates to the public it is worthy of their trust." Learn more

e-LEARNING EVENT: ADAPTING TO CHANGES IN HOME OXYGEN AND MEDICARE
Penni Potter Pereze-Learning Event Series
Home Oxygen and Medicare: Understanding the recent changes
March 16, 2009
6:30 p.m. ET
Webinar - LOGIN BOTH WEB & PHONE
 
Join PHA's Margaret Beardsworth along with Penni Potter-Perez, Manager of PSI ACCESS, in a webinar to explore Medicare home oxygen regulations.
 
As of January 2009, regulations regarding Medicare home oxygen coverage have changed. Penni Potter-Perez will give a brief introduction to Medicare and the different components of home oxygen followed by an explanation of both the old and new regulations. She will also explore what these recent changes mean for PH patients. There will be an opportunity to ask questions at the end of the presentation.
 
Upcoming e-Learning Event: Special Event Planning 101, March 26, 1:00 p.m. ET
 
PHA's monthly e-Learning Events are made possible through unrestricted educational grants from Eli Lilly & Company and Pfizer Inc.
A NICKEL CAN MAKE A DIFFERENCE!

Nikki ElsenbroekDo you think a nickel can make a difference in the fight for a PH cure? We know it can!
 
The second annual "A Cure for Five Pennies: Daddy's Little Girl" fundraiser was held Jan. 31, 2009, in Schaumburg, Ill., to honor 7-year-old Nicole "Nikki" Elsenbroek. Nicole was not only the reason for the event, but also the back story for the event's unusual name. The name evolved because Nicole's father, Scott Elsenbroek, nicknamed his daughter "Five Pennies" because, he said, five pennies equals a nickel (Nicole). 
 
The event raised $4,000 and is a result of one patient's tie to her community and the awareness of PH that she has helped to inspire. Read story
LATEST JOURNAL AVAILABLE ONLINE!

Summer 208 JournalThe Summer 2008 issue of Advances in Pulmonary Hypertension is now online! Focusing on PH and connective tissue diseases; articles in this issue feature PH and systemic lupus erythematosus, scleroderma associated with PH, a discussion on combination therapy, an AMA accredited CME section, and much more! Read the journal now
PH IN THE NEWS
PHA News' Editor Given a Helping Hand By Students
(Rome News-Tribune, Rome, Ga.) - Students with the Floyd County Education Center are learning how to make better choices, and while they learn this lesson, money raised from one project will be donated to PHA in honor of FCEC teacher and PHA News' Editor Sally Maddox. Read article 
 
Mountains To Climb: Ray Benza Goes to New Heights For PH Cure

(Pittsburgh Professional Magazine) -- Dr. Raymond L. Benza completed a 4-day trip to the summit of the Grand Teton Mountain in Wyoming to gain insight into the daily life of a PH patient and to honor a late colleague claimed by PH. Read article (PDF)
 
U.S. Food and Drug Administration Issues Response
(PharmaLive.com) -- Actelion Ltd has received a complete response letter from the U.S. Food and Drug Administration (FDA) regarding the supplemental New Drug Application (NDA) the company filed in August 2007. Read article
 
Actelion Acquires New Formulation of Intravenous Epoprostenol
(ALLSCHWIL/BASEL, SWITZERLAND ) -- Actelion entered into a definitive agreement Feb. 23 to acquire an improved, thermostable formulation of epoprostenol sodium for the intravenous treatment of pulmonary arterial hypertension (PAH) from privately-held GeneraMedix Inc. (GXI). Read article
 
FDA Approves SYMBICORT(R) for Chronic Obstructive Pulmonary
(PR Newswire) -- AstraZeneca announced Feb. 27 that the U.S. Food and Drug Administration (FDA) has approved SYMBICORT (budesonide/formoterol fumarate dihydrate) 160/4.5 mcg for the twice daily maintenance treatment of airflow obstruction in patients with chronic obstructive pulmonary disease (COPD), including chronic bronchitis and emphysema. Read article

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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.