Thursday, July 30, 2015

Learn How to Pitch Your PH Story to the Media

Monday, August 3, 2015

8:00 p.m. EDT

Online Webinar

So you have a great story to tell – one that will make more people aware about PH. Now what?

Learn Five Steps to Pitching Your Story for the Media. Understand how a newsroom works and how to frame what makes your story newsworthy.

Join PHA’s VP of Communications and Marketing Kelly Williams for the second in PHA’s Media Speakers Training. Use Your Story to Fight PH. Register now.

Wednesday, July 29, 2015

PH Care Centers Workshops to Be Held at PHPN Symposium

The upcoming PHPN Symposium for healthcare professionals, which will be held in Arlington, Va., from Sept. 17-19, 2015, will feature two unique opportunities for those seeking PHA's Accreditation for their Pulmonary Hypertension Care Centers.

Since early 2011, PHA's Scientific Leadership Council, which is made up of 28 global leaders in the field of pulmonary hypertension, has spearheaded the PHA-Accredited PH Care Centers (PHCC) initiative to establish a program for accreditation of centers with special expertise in pulmonary hypertension (PH), particularly pulmonary arterial hypertension (PAH), to raise the overall quality of care and outcomes in patients with this life-threatening disease. Today, there are 26 Adult and Pediatric Comprehensive Care Centers that have received accreditation from PHA.

PH Care Centers are encouraged to apply. And, there will be two workshops at the 2015 PHPN Symposium which are designed to assist interested centers in the application process.

The Accreditation Journey: PHCC Site Visits 
Friday, Sept. 18, 11:30 a.m. - 12:30 p.m.
Led by expert site reviewers

PH Care Centers (PHCC) Workshop
Saturday, Sept. 19, 2015, 2:30 p.m. - 4:00 p.m.
Recent developments and structural changes to the PHCC program will be discussed

There is no additional fee for Symposium registrants to attend these workshops, however space is limited. To participate, please check the box on your Symposium registration form. If you have already registered for Symposium, please email with your first/last name and occupation.

More Than 200 Community Members Join Us "on the Road"
This past Saturday, July 25, 2015, PHA visited Philadelphia, Pa., with our free day-long event, PHA on the Road: PH Patients and Families Education Forum. More than 200 patients, family members, caregivers and medical professionals were in attendance to learn, connect and network in the spirit of the day.

The highlight of the day was the keynote address given by Leslie Polss. The PH patient, advocate and Delaware Valley Support Group co-Leader spoke about her experience with PH and how she would not let the disease limit her experiences. She knew that she was not going to let PH keep her from fulfilling one of her life's dreams of seeing the Northern Lights, despite needing to be in frigid cold temperatures to see the visual phenomenon.
Leslie's story of how she came to fulfill this dream in March 2014, in Fairbanks, Alaska, was truly inspiring. She told her audience, "if there's something you really want to do, find a way to do it."

Another special feature of the day was the question & answer session that was hosted specifically for children and teens. Dr. Brian Hanna of Children's Hospital of the Philadelphia, and Rachel Tkaczyk, MSN, CRNP, of the Morgan Stanley Children’s Hospital, came to the PHA on the Road Kids' Room to speak with the children in attendance. The group, which was made up of both pediatric patients and young family members of PH patients, made a list of questions about PH to ask during the session. The medical professionals spoke with their young audience and answered their questions.

Dr. Brian Hanna and Rachel Tkaczyk, MSN,CRNP (back) answer questions.
PHA on the Road is not over yet! We are visiting Phoenix, Ariz., and St. Louis, Mo., in October.  

Tomorrow: Connective Tissue Webinar

Thursday, July 30, 2015, 2:30 p.m. ET/11:30 a.m. PT
Presented by Yon Sung, MD and Lorinda Chung, MD

This webinar will describe how the pathology and pathophysiology of Connective Tissue Disease – pulmonary arterial hypertension differs from idiopathic PAH. It will also discuss the evidence for the use of immunosuppression in CTD – PAH. This is a CME webinar. Learn more or register.

Tuesday, July 28, 2015

Find a Support Group Near You

Remember when you or your loved one was diagnosed with pulmonary hypertension? Was it an emotional experience? Difficult or challenging? Maybe you think you don’t need a PH support group, but… what if they need you? Give the gift of hope, share your story and inspire others at the next PH Support Group. Find one near you.

Thursday, July 23, 2015

This Coming Saturday: Philadelphia PHA on the Road

Saturday, July 25, 2015
8:30 a.m. – 5:00 p.m.
Philadelphia Marriott Downtown
Philadelphia, Pa.

Don't miss out! PHA's FREE full-day regional education forum, PHA on the Road: PH Patients and Families Education Forum, will be in Philadelphia, Pa., on Saturday, July 25. On-site registration will be available, but space is not guaranteed.

This patient-focused program offers interactive presentations, educational sessions and networking opportunities for patients, caregivers and PH medical experts in the region. All PH patients, family members and friends are welcome to attend. Learn more.

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Want to know the latest news on PH and PHA? Sign up to receive PHANews, PHA's weekly e-newsletter providing the latest news for the PH community. Stay updated on stories such as this week's spotlight on the Pacing Parson and other highlights. Learn more in this weeks issue, sign up and view our archives.