In Memoriam: Rino Aldrighetti

With great sadness, the Pulmonary Hypertension Association (PHA) announces the death of Rino Aldrighetti, who led PHA for nearly two decades.

Rino, who died May 30, was the first PHA employee, hired in 1999 as part-time executive director. He soon became full-time and later was promoted to president and CEO. He retired in 2016 after PHA’s International PH Conference and Scientific Sessions.

“Rino was a dreamer and a visionary,” says PHA Chair Colleen Brunetti. “Status quo was never enough. He was forever coming up with new innovative ideas for PHA to grow and increase our impact.”

Tall with a commanding but friendly personality, Rino shepherded PHA from a small grassroots organization to the largest pulmonary hypertension organization in the world. Under his leadership, PHA became a professionally staffed organization, rapidly expanding the organization’s fundraising, budget and services.

“When you think of this period in PHA’s development, I hope that you will think that I tried my hardest to lead this organization with integrity and a deep and abiding desire to change the history of this disease for the good of patients,” Rino said in his retirement speech at PHA 2016.

Fierce, caring advocate
“Rino was in it not for the job, nor to establish a career, nor even to create an exemplary organization,” says Michael McGoon, M.D.,” a member of PHA’s Scientific Advisory Committee since its 1992 inception. “Rino was in it because he clearly saw that the potential of this patient-centric organization grounded in clinical science. He know PHA could do something meaningful for patients.”

Colleen realized Rino’s commitment to people with PH when she met him at PHA’s PH Professional Network Symposium not long after she was diagnosed. She related her challenges in trying to reach her specialty pharmacy about medication delivery problems.

“Rino picked up his phone and dialed that contact directly” she recalls. “My jaw hit the floor.” Rino spelled out the importance of the situation, what needed to be done and how the lack of response was unacceptable. “Long story short, I had my medications shortly after,” she says.

“In that moment, I knew we had the most fierce and caring advocate as the head of PHA, and we were so lucky. Under his leadership and at his nudging, I would go on to tell my story to many companies, and help create a program at PHA that still helps patients access care today. I am forever grateful.”

Embracing research
Described as a risk taker, Rino embraced and supported initiatives to improve access and quality of PH care, fund research and build a vibrant support group network. He opened PHA’s first Silver Spring, Maryland, office and hired its second employee.

“He embraced support for research to improve the lives of PH patients and rose to the challenge of fundraising,” says Greg Elliott, M.D. Rino supported the Research Room at Conference and embraced the idea of creating a network of accredited PH care centers modeled after a Cystic Fibrosis Foundation program, Dr. Elliott says.

Rino’s many accomplishments include PHA’s launch of Advances in Pulmonary Hypertension, the first medical journal dedicated to PH.

Rino was especially committed to expand PHA’s culture globally. He recognized that each country or region incorporate PHA’s ethos of concern for patients and worked with representatives in other countries to build a network of PH organizations worldwide, McGoon says. His passion for international collaboration led to the 2010 establishment of the International Leaders Summit at PHA’s conference.

Before joining PHA, Rino was executive director of the National Family Farm Coalition, executive secretary of the National Volunteer Organizations Active in Disaster, development director for the National Council for Adoption, and associate director of development and public relations for the National Shrine of Immaculate Conception.

In addition to his considerable nonprofit experience, he was active in his Takoma Park, Maryland, community on public safety and other grassroots issues.

As the PH community mourns Rino, the Aldrighetti family hopes you will continue his commitment to PHA by contributing to the Rino Aldrighetti Leading From the Heart fund.

Gifts to this fund will support PHA’s critical patient care and education programs as well as cutting-edge research to find new treatments and a cure for PH — causes Rino supported with passion.

Rino Aldrighetti with attendees at PHA 2018 International PH Conference and Scientific Sessions. Photo: Kathleen Sheffer.