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and activities affecting the life of the PH community.
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Topics For This Issue
FREE REGIONAL MEDICAL EDUCATION SESSIONS
for Medical Professionals, Patients, and Families
--Orange County (CA), Dearborn (MI), Charlotte (NC), Pittsburgh (PA), Philadelphia (PA), Houston (TX)
NEWS
--NHLBI Scientists Find Blood Test Predicts Common and Severe Complication of Sickle Cell Disease, and Identifies Patients at Highest Risk of Death
--Tracleer Study First Ever to Show Benefits in Eisenmenger's Syndrome
--FDA Delays Decision on Drug
ANNOUNCEMENTS
--Conference Videos Online
--Conference Resources Available
--PH Heart Pins on Sale
--PHA Database Manager Job Opening
FREE REGIONAL MEDICAL EDUCATION SESSIONS
for Medical Professionals, Patients, and Families
Sponsored by the Pulmonary Hypertension Association and the Univerity of Michigan Medical School
September 16 - Orange County, CA
September 30 - Dearborn, MI
October 7 - Charlotte, NC
October 14 - Pittsburgh, PA
November 4 - Philadelphiam PA
November 4 - Houston, TX
VISIT YOUR MEMBERS OF CONGRESS DURING AUGUST RECESS
Support the PH Research Act
Want to educate your Members of Congress about the PH Research Act, but can't make it to the capitol? Now's your chance!
It's district visit time again. During August, Members of Congress work from offices in their home states. This makes it the perfect time to contact them about supporting the PH Research Act.
Whenever members of the PH community work together and ask their elected officials to support the PH Research Act, we make progress. Together, we are making a difference!
For more information about scheduling a district visit for your support group, join PH parent Carl Hicks and lobbyist Gavin Lindberg on one of the upcoming district visit conference calls. Calls will take place Wednesday July 26 at 7 p.m. EST and Monday July 31 at 8 p.m. EST.
For call-in information, or if you are interested and are not part of a support group, contact Katie at katherine@PHAssociation.org or 301-565-3004 X109.
HARRIS INTERACTIVE POLLING PH PATIENTS
Harris Interactive, an independent survey research firm best known for The Harris Poll, is conducting a survey of Pulmonary Arterial Hypertension (PAH) patients. They write that they hope learning about your experiences will help explore ways of improving treatment for all PAH patients. Specifically, they are interested in surveying patients who are currently using or who have ever used Tracleer at any time now or in the past to treat their PAH. So, even if you no longer use Tracleer, you may still qualify. If you qualify and complete the entire survey, you will receive a $50 cash incentive for your participation.
As with all Harris surveys, your responses will be kept strictly confidential and reported in the aggregate only. For your convenience, there are two ways to make your opinions known: you may complete the survey online or by telephone by August 7. The survey takes most people about 25 minutes to complete. Participate online or to participate by telephone, please call toll-free 1-800-424-8660.
If you have any questions or concerns about this study, please contact Eleanor Chand-Matzke at 212-539-9744 or send an email to surveyhelp@hpol.harrisinteractive.com referring to study #27505.
NEWS
NHLBI Scientists Find Blood Test Predicts Common and Severe Complication of Sickle Cell Disease, and Identifies Patients at Highest Risk of Death A team of scientists with the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health has found that a hormone detected in a simple blood test can identify patients with sickle cell disease who have developed pulmonary hypertension.
Read story
Tracleer Study First Ever to Show Benefits in Eisenmenger's Syndrome
Actelion Ltd announced that in the BREATHE-5 study evaluating the use of Tracleer (bosentan) in pulmonary arterial hypertension (PAH) related to Eisenmenger's syndrome, patients significantly increased their exercise capacity and decreased pulmonary vascular resistance (PVR) under treatment. Read story
FDA Delays Decision on Drug
Encysive Pharmaceuticals on Monday received a second letter delaying a decision by the FDA on its heart drug, Thelin, which is also under review in Europe. Thelin was designed to treat pulmonary arterial hypertension, or PAH, which is continuous high blood pressure in the arterial artery of the heart, which can lead to heart failure. Read story
Conference Resources Available
Photos, speeches, abstracts, videos, reports from participants, and more. Check them out!
PH Heart Pins on Sale
Wear a symbol that aptly characterizes PHA's community of hope. Spur others to action with the "Help Cure PH" message. Actual size 3/4in x 3/4in. Help promote PH awareness.
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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
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