Family, friends and the entire pulmonary hypertension community mourn the loss of a pre-eminent leader in the field of pediatric PH, Robyn J. Barst, M.D., on April 19. Dr. Barst was both a pioneer in the field and a hero to many for her treatment of the disease and her compassion towards her patients. Her legacy continues to shape the medical profession and touch lives.

“Robyn would have wanted people not to mourn her but continue her fight against PH. That’s why supporting PHA’s research and education to end this terrible disease is so important," shares Sam Barst, Robyn’s husband.

Donate to PHAYou can remember Dr. Barst and advance pediatric research and mentoring today. Dr. Barst’s family has requested contributions to PHA’s Dr. Robyn J. Barst Pediatric Research and Mentoring Fund for Pulmonary Hypertension at PHA. Memorial gifts to this fund will carry on Dr. Barst’s commitment to advancing the field of pediatric PH. It is a mission she not only lived throughout her lifetime. She invested in its future by donating the generous gift that founded this important fund. The Barst Fund is providing its first round of grants this year. We invite you strengthen PHA’s ability to educate and train even more pediatric PH specialists in Dr. Barst’s memory. 

We invite you to watch what Dr. Barst and others in the field have to say about the importance of pediatric research through this special initiative.

Why Pediatric Pulmonary Hypertension is Important

Three decades ago, pediatric cardiologist Dr. Robyn Barst and other pioneer researchers helped to move pulmonary hypertension toward its first treatment in 1996. Before the FDA approved that first drug, survivability was 2.8 years for 50% of patients. Research led to eight more treatments for PH patients since 2001. Today, there are twelve treatments for pulmonary hypertension — only two of the 7,000 identified rare diseases have more treatments. Unfortunately, there is still no approved treatment for children with PH.

During the past decade of extraordinary research and clinical activity, the number of physicians treating this disease has increased from about 100 to an estimated 12,000. Driven by research, this medical field is in rapid formation.


PHA is committed to placing the issue of pediatric PH squarely at the forefront of the PH research agenda. PHA has a proven track record in supporting research through four leveraged partnerships which, to date, have enabled the organization to commit more than $12 million to PH research.

Moreover, through PHA's Scientific Leadership Council — a body of 28 world-renowned PH researchers and clinicians — PHA has the structure in place to establish and oversee an effective pediatric PH research program. The SLC's Research Committee will play a critical role in the development, management, and oversight the pediatric research program.

Robyn Barst,
PH Trailblazer

Robyn Barst, MDFor two-and-a-half decades, Dr. Robyn Barst established herself as a leader in the field by providing state of the art medical care for children and adults with PH, founding the New York-Presbyterian PH Center, conducting groundbreaking research in the field, mentoring numerous clinicians, and serving in PHA leadership through the Board of Trustees and Scientific Leadership Council.

Faces of
Pediatric PH

Sarah Mary Peek accomplishing her biggest dream to go to school!When it comes down to it, research is about people, in this case children with pulmonary hypertension and their families...and those who make the choice to help. Read the stories of these families' journeys with PH through heartache and joy.

Julie Lisante

Sarah Mary Peek

Katie Grace Groebner

Evelyn Melendez

Maddie Heaton (video below)

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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.