PHA News – for patients, families, caregivers, and healthcare professionals

The Right Heart

Finding Hope in the PH Community and Research Studies

Morgan Nuchols began to show signs of PH as a baby. Today the 28-year-old participates in the Pulmonary Hypertension Association’s Generation Hope Facebook Support Group for young adults. She also participates in research studies to in hopes of finding a genetic link between pulmonary hypertension and congenital diaphragmatic hernia. She also participates in research studies to in hopes of finding a genetic link between pulmonary hypertension and congenital diaphragmatic hernia.

PAH Diagnosis Leads to New Outlook on Life

A month after her diagnosis, Wendy McBride was sitting in her living room attached to a central line. Despite a five-year prognosis, she chose to live rather than die. Her life changed for the better as she learned to cope through diet, exercise and a quit-feeling-sorry-for-yourself attitude. She discovered a strength she never knew she had.

Determined To Be Defined by More Than PH

The past 23 years have shown Dawn Meador how strong she is. Since her 1998 diagnosis, she’s learned much about herself and how to appreciate little things. Dawn, of Suffolk, Virginia, shares her long-time pulmonary hypertension journey for the Pulmonary Hypertension Association’s 30th anniversary.

Familial PAH Diagnosis Prompts Need to Give Back

Kayla Naecker had classic signs of pulmonary hypertension (PH), a disease that killed her biological grandmother. But Kayla, of Benld, Illinois, didn’t suspect PH. She was in her 20s, and her grandmother’s case was thought to be associated with diet pill use. Genetic testing after a right heart catheterization confirmed familial PAH, so Kayla had her 3-year-old daughter tested, too. Kayla shares her story with the Pulmonary Hypertension Association’s Right Heart Blog for American Family Month.

Thankful for Treatment Advancements That Give Hope

Pulmonary hypertension (PH) was no stranger to Albert Wright when she was diagnosed in 2018. Her oldest sister and a niece died from it. But Alberta lives life to the fullest, taking nothing for granted. She leads the Pulmonary Hypertension Association’s Detroit Support Group and administers a PHA Facebook support group page. A full-time teacher’s aide, she shares her PH journey with PHA’s Right Heart Blog for National Family Month in June.

Living in the Moment With New Lungs

A month before Genevieve Hughes turned 50, severe shortness of breath forced her to seek emergency treatment. “I thought I was just getting older and out of shape,” says Genevieve, who later learned she had idiopathic pulmonary arterial hypertension and eventually would need a double-lung transplant. Now two years post-transplant, she’s breathing deeply and enjoying her gift of life.

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Featured News

Learn About ‘PH and HIV’

Join the Pulmonary Hypertension Association (PHA) at 3:30 p.m. EST, Wednesday, Dec. 8 for “PH and HIV. Christopher F. Barnett, M.D., M.P.H., of the University of California-San Francisco will lead this PHA Live webinar about the risks of developing pulmonary arterial hypertension for people with HIV. As people with HIV live longer thanks to improved treatment, they can develop cardiovascular diseases, including PAH.

PHA Leaders Participate in PH Forums

Pulmonary Hypertension Association (PHA) leaders recently participated in several international conferences on pulmonary hypertension (PH). Their participation represents PHA’s longstanding leadership in PH research, policy and patient support.

Share Your PH Story or Research at PHA 2022

The Pulmonary Hypertension Association is seeking speakers for PHA 2022 International PH Conference and Scientific Sessions. People with pulmonary hypertension, family members and caregivers may submit applications to present breakout sessions. Health care professional can submit abstract or symposia proposals for the Scientific Sessions. Applications are due Dec. 23.

Download a Free Copy of Pathlight to Spark PH Awareness

Pulmonary Hypertension Awareness Month is underway with 11 days of digital tools and downloadable resources to help others “Spark Awareness.” Today, we’re offering a free download of a recent issue of Pathlight, the Pulmonary Hypertension Association’s quarterly member magazine.

Double Your Impact on GivingTuesday

Mark your calendars for Giving Tuesday. The world-wide day of giving is Tuesday, Nov. 30. Help support the pulmonary hypertension community by donating to the Pulmonary Hypertension Association. In honor of PHA’s 30th anniversary, a group of generous donors have agreed to match gifts dollar-for-dollar up to $30,000.

See Our Updated COVID-19 FAQ on Vaccines for Kids

The Centers for Disease Control and Prevention last week recommended a low-dose pediatric Pfizer-BioNTech vaccine for children 5 to 11. The vaccine has emergency use authorization from the U.S. Food and Drug Administration. The recommendation expands vaccine access to about 28 million children in the U.S. For more information, visit the Pulmonary Hypertension Association’s COVID-19 FAQ.

Discover PHA’s CTEPH Resources

CTEPH Awareness Day wrapped up Wednesday, but you can still learn more about chronic thromboembolic pulmonary hypertension. See our Nov. 28 PHA Live event of CTEPH on demand, and discover more PH resources from the Pulmonary Hypertension Association.

What’s the Connection Between PH and Left Heart Disease?

During PH Awareness Month, the Pulmonary Hypertension Association (PHA) is sparking awareness about left heart disease. Left heart disease is one of the most common causes of pulmonary hypertension. Download our new brochure, “PH & Left Heart Disease,” and join us Nov. 16 for a PHA Live presentation by Vineet Agrawal, M.D., Ph.D.

PHA Fundraisers Net $200K+ in 2021

The Pulmonary Hypertension Association (PHA) raised more than $200,000 through fundraising events this year. That includes more than 20 virtual events, two golf tournaments and an in-person walk. The majority of the fundraisers were PHA O2breathe walks conducted virtually because of the pandemic.

CEO Update: Spark Awareness for PH With Our Shareable Tools

Please join the Pulmonary Hypertension Association in celebrating Pulmonary Hypertension (PH) Awareness Month. This year, we’re focusing on PH caused by left-heart disease. We’re bringing back our award-winning interactive Awareness Month calendar with downloadable resources and rewards to share with families, friends and colleagues.

Find Your ‘Perfect-Fit’ Doctor

Lorraine Robbins of Warrington, Pennsylvania, shares how she advocated for herself in the eight years between her idiopathic pulmonary hypertension diagnosis and her lung transplant. Lorraine related her story in the September issue of Pathlight, the Pulmonary Hypertension Association’s quarterly member magazine.

Open Enrollment Season Is Here

Now is a good time to review your health coverage. Open enrollment season is starting, which means health plans allow beneficiaries to add or change insurance coverage without penalties.

CTEPH Awareness Day Is Nov. 10

Join us for CTEPH Awareness Day on Nov. 10 and spark awareness for chronic thromboembolic pulmonary hypertension (CTEPH). Check out our CTEPH Awareness Day toolkit for sample social media posts and graphics to share on your social media profiles Nov. 10.

Devoted to Each Other and PHA

The Pulmonary Hypertension Association recognizes the long-term love between Georgette and Dean Bridger in our end-of-year fund raising campaign. Join them in making a gift to give all families affected by pulmonary hypertension hope for the holidays.

Pathlight Wins Award for Anniversary Issue

The Pulmonary Hypertension Association won a gold/silver/bronze award from Association Trends, which recognizes nonprofit organizations’ outstanding communications and marketing efforts. PHA’s award was for its Winter 2020 issue of Pathlight magazine, which launched our 30th anniversary celebrations.

Are You Your Best Advocate? Pathlight Shows How Persistence Pays Off

The fall issue of Pathlight magazine focuses on pulmonary hypertension (PH) advocacy and awareness. People with PH and caregivers share how they advocated for appropriate diagnosis and treatment, as well as tips for educating others. In the cover story, Mike Naple of Washington, D.C., relates “Putting Advocacy Experience to Work for PH Community.”

450+ Clinicians Attend PHA’s First Online Symposium

The Pulmonary Hypertension Association welcomed more than 450 attendees to its PH Professional Network Symposium Sept. 30-Oct. 3. Health care professionals spent four days learning about advancements in pulmonary hypertension (PH) research and care while earning continuing education credits.

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PH Research

PHA Journal: How PAH Affects Organs, Obesity, Other Diseases

The latest issue of Advances in Pulmonary Hypertension addresses pulmonary arterial hypertension (PAH) as a systemic disease. “Even in its purest form, the idiopathic or hereditary PAH, the rest of the body is affected when various organs begin suffering from inadequate perfusion, initially with exertion, then even at rest,” says guest editor Ioana R. Preston, M.D. “Even in its purest form, the idiopathic or hereditary PAH, the rest of the body is affected when various organs begin suffering from inadequate perfusion, initially with exertion, then even at rest,” says guest editor Ioana R. Preston, M.D.

Missed Our Research Room Webinar? Here’s Our Recap

A recent Pulmonary Hypertension Association (PHA) webinar unveiled learnings from six studies conducted at PHA 2108 International PH Conference and Scientific Sessions. Doctors shared updates about the studies in the July 29 PHA Live webinar “PHA Research Room Findings.” More than 200 patients and healthy subjects participated in Research Room 2018, sharing data and biological samples with 10 research teams. 

Learn Findings from the 2018 PHA Research Room

Join the Pulmonary Hypertension Association (PHA) at 3:30 p.m. EST Thursday, July 29 for “PHA Research Room Findings.” Hear from scientists and clinicians about Research Room study findings from the 2018 PHA International PH Conference and Scientific Sessions.

Study: PH Support Groups Are Good for Your Health

Your support group participation might improve your life more than you realize. A recently published study shows that support groups improve meaningful health-related outcomes, such as self-care, pulmonary hypertension symptom management, medication adherence and understanding related medical procedures.

FDA Approves First Drug for Group 3 PH

The FDA recently approved Tyvaso (treprostinil) Inhalation Solution to improve exercise ability for people who have PH associated with interstitial lung disease. Manufactured by United Therapeutics, Tyvaso is the first FDA-approved treatment for Group 3 PH.

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