PHA News Home 2018-09-21T16:59:53+00:00

Darby Hetrick

Living My Best Life With PH

PHA Conference

PHA Board of Trustees

Jesus Cornejo: Big Heart

Film by Enrique Franco Martin

Chloe Temtchine

Facebook Live Mini Concert

Kerry Babylon

The Importance of Family



PHANews.org, a publication of the Pulmonary Hypertension Association (PHA), is the trusted source of up-to-date news, community events listings and lifesaving information about pulmonary hypertension for patients, families and caregivers, healthcare professionals and supporters.

The Right Heart

Post-Transplant Life is an Unexpected Adventure

By Kathleen Sheffer From left, Kathleen and Monica in the German Alps, with help from a self-timer. Against a fair amount of unfavorable odds, I will be photographing PHA’s 13th International PH Conference and Scientific Sessions. This will be the ninth Conference

Rebekah Calverley Lives an Amazing, Beautiful, Fearless Life with Pulmonary Hypertension

Born in Auckland, New Zealand, Rebekah was sick a lot as a toddler with colds and even pneumonia.  That didn’t stop her from being active like any other child as her parents searched for answers for her continued illnesses. When she was two and

Early Diagnosis and Advanced Care Put Indianapolis Mom with Pulmonary Hypertension on Promising Path

Indianapolis, Ind. (April 10, 2018) -- Donna Sparks combats a progressive life-threatening lung disease with courage, conviction and compassion -- for herself and others who share her fight. Diagnosed three years ago with pulmonary hypertension (PH), Donna is an active participant in myPHA, the

St. Louis Survivor of Deadly Lung Disease Working Hard, Inspiring Others and Breathing Easily

St. Louis, MO (March 20, 2018) -- Amanda Harvey-McKee’s life is the epitome of the notion that if you want to get something done, give it to a busy person. At age 39, she works 60 plus hours a week -- often flying from

Washington, D.C. Golden Glove Lightweight Champion Elvis Medrano Faces Biggest Battle with Deadly Lung Disease Diagnosis

Silver Spring, Md. (March 13, 2018) -- In and out of the boxing ring, Washington, D.C., Golden Glove lightweight champion Elvis Medrano is in a daily battle for his life. At 27, he’s lived six years with pulmonary hypertension (PH), a life-threatening disease also known

PHA Support Group Leader Stephanie Bachelder Wears Many Hats in Meeting With Congressman

PHA support group leader volunteers take on many roles in the pulmonary hypertension (PH) community. Many are living with PH -- others are caregivers or health care professionals -- in addition to being constituents, advocates, friends, mentors and champions of the PH community. Support

How the Unknown Led to Certainty for PhD Student and PH Patient Raele Robison

Raele Robison was a student in a demanding PhD program when she was diagnosed with scleroderma and pulmonary hypertension. Now armed with answers about what was causing her mysterious symptoms, she is living her best life with PH. By Raele Robison I remember the way

The Barefoot Movement: PHighting for a Cure for Jackson

Noah Wall is a singer, songwriter, and fiddler in the award winning acoustic band “The Barefoot Movement.”  Her nephew Jackson Wall was diagnosed with pulmonary hypertension (PH) at one year old. Jackson’s parents hold a golf tournament each year to raise funds and awareness for

Featured News

Choose Your 2019 Medicare Coverage Through Dec. 7

Medicare open enrollment, also called annual enrollment, has begun and continues through Dec. 7. During open enrollment, all Medicare participants have the opportunity to change Medicare plans or add or drop coverage.

PHA Recognizes Respiratory Care Week

In recognition of Respiratory Care Week Oct. 21-27, the Pulmonary Hypertension Association (PHA) interviewed a registered respiratory therapist and certified pulmonary function technician. Tonya Zeiger, R.R.T., CPFT, is the pulmonary

PHA Engages Health Care Professionals at CHEST Annual Meeting

The Pulmonary Hypertension Association (PHA) recently exhibited at the American College of Chest Physicians (CHEST) Annual Meeting 2018 in San Antonio. Hundreds of health care professionals from around the globe

It’s No Trick: These Kids with PH Are a Treat

Pulmonary hypertension (PH) is not just a disease for adults, so the Pulmonary Hypertension Association (PHA) works hard to support children with PH and their families. In 2017, PHA

Attend PHA on the Road – Milwaukee: Speaker Highlights

The Pulmonary Hypertension Association (PHA) will host PHA on the Road: PH Patients and Families Education Forum Saturday, Oct. 27, in Milwaukee. This unique education and networking forum provides people

Hear Ye! Hear Ye! Get Your Proclamation During Pulmonary Hypertension Awareness Month

Proclamations – statements encouraging people to take note of a particular person, place or time of year – are a popular way for elected officials to recognize issues that

Raise Funds and Awareness to Support PHA’s Mission During Awareness Month This November

November is Pulmonary Hypertension Awareness Month, presenting a great opportunity to raise money needed to fund the mission of the Pulmonary Hypertension Association (PHA), and to raise awareness of

Using a Risk Score Calculator to Predict Survival Rates

by Phyllis Hanlon, Contributing Writer The Registry to Evaluate Early and Long-term PAH Disease Management (REVEAL registry) is a study of approximately 3,500 people with World Health Organization (WHO) Group

Support a PHA Fundraising Event for Pulmonary Hypertension Awareness Month

This November, many pulmonary hypertension (PH) community members around the country will gather not only to raise awareness, but also to raise funds to help support the mission of

The DIBOSA Study: The 6MWT Helps Predict PH in Patients with SSc

by Phyllis Hanlon, Contributing Writer Research has found that World Health Organization (WHO) Group 1 pulmonary hypertension (PH) (pulmonary arterial hypertension, or PAH) affects 8 to 12 percent of

PHA on the Road – Long Beach Welcomes More Than 200 PH Community Members

The Pulmonary Hypertension Association (PHA) hosted a PHA on the Road: PH Patients and Families Education Forum Saturday, Sept. 29, in Long Beach, Calif. The forum brought together people

Two Pulmonary Hypertension Programs Receive PHA’s PHCC Accreditation

The Pulmonary Hypertension Association’s (PHA’s) Pulmonary Hypertension Care Center (PHCC) program granted Regional Care Program (RCP) accreditation to the Pulmonary Hypertension Program at Northside Hospital in Atlanta, and the

Take Action Now and on November 8 with PHA’s Advocacy Action Center

Recently, Kerry Babylon, an adult with pulmonary hypertension (PH) and Silver Spring, Md., PHA support group leader, visited the Rockville, Md., district office of U.S. Rep. Jamie Raskin (D-Md.).

People with PH: Be Proactive and Prepare for Flu Season

Staying healthy during cold and flu season is important for everyone, but for patients with pulmonary hypertension (PH), it is especially important. Cold and flu prevention is the key.

Results of Portopulmonary Hypertension Trial Released at European Respiratory Society Meeting

Actelion Pharmaceuticals Ltd. has announced the results of the first randomized controlled trial in portopulmonary hypertension (PoPH), which showed that macitentan (Opsumit®) significantly improved pulmonary vascular resistance (PVR) compared

Why Chair Yoga for People With Pulmonary Hypertension?

by Kaye Norlin, adult with PH and Central Illinois support group leader NOTE: Always check with your physician before beginning any new exercise program. September is National Yoga Month.

Analyzing the Effects of PH in Patients with Kidney Disease

by Phyllis Hanlon, Contributing Writer According to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) approximately 14 percent of the general population has chronic kidney disease (CKD);

PHight for Life Brings Community of PHighters Together

The fourth annual PHight for Life event will take place in Rochester, N.Y., Sunday, Nov. 4, during pulmonary hypertension (PH) awareness month. The event is planned and hosted by

PHPN Mentor Program Provides Valuable Lessons to Health Care Professionals

The diagnosis of pulmonary hypertension (PH) is overwhelming in patients’ and caregivers’ lives. It also can prove challenging to health care professionals new to the field. Before health care professionals

The Wrath of Mother Nature: Preparing for Natural Disasters

Natural disasters are frightening, especially for those coping with PH, but good preparation can allay some of the fear. This information can help you be ready for the worst

PHA Press

PHA Accreditation Program Assures Access to Specialized Care for Thousands with Often-Misdiagnosed Deadly Lung Disease

SILVER SPRING, MD (October 3, 2018) – A national accreditation program launched by the Pulmonary

PHA Accreditation Program Assures Access to Specialized Care for Thousands with Often-Misdiagnosed Deadly Lung Disease

SILVER SPRING, MD (October 3, 2018) – A national accreditation program launched by the Pulmonary

Global Community Joins Hearts to Advocate for People Living with a Commonly Misdiagnosed and Deadly Lung Disease

SILVER SPRING, MD (April 13, 2018) – Organizations around the world will join forces on

PH Research

Using a Risk Score Calculator to Predict Survival Rates

by Phyllis Hanlon, Contributing Writer The Registry to Evaluate Early and Long-term PAH Disease Management (REVEAL registry) is a study of approximately 3,500 people with World Health Organization

The DIBOSA Study: The 6MWT Helps Predict PH in Patients with SSc

by Phyllis Hanlon, Contributing Writer Research has found that World Health Organization (WHO) Group 1 pulmonary hypertension (PH) (pulmonary arterial hypertension, or PAH) affects 8 to 12

Results of Portopulmonary Hypertension Trial Released at European Respiratory Society Meeting

Actelion Pharmaceuticals Ltd. has announced the results of the first randomized controlled trial in portopulmonary hypertension (PoPH), which showed that macitentan (Opsumit®) significantly improved pulmonary vascular resistance

Analyzing the Effects of PH in Patients with Kidney Disease

by Phyllis Hanlon, Contributing Writer According to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) approximately 14 percent of the general population has chronic kidney

Examination of PHAR Data Shows Few Patients are Referred to Palliative Care

Although treatment options for WHO Group 1 PH (pulmonary arterial hypertension, or PAH) have increased over the past few decades, symptom severity and quality of life still

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