As we celebrated World PH Day at the beginning of May, I had the honor to be invited and participate in a Spanish-language Instagram Live chat with the Sociedad Latina de Hipertensión Pulmonar. The three other panelists – pulmonary hypertension patient leaders from the US, Europe and Latin America – and I fielded questions about the challenges of living with PH and a variety of other topics.

As the largest and most recognized PH organization around the globe, the Pulmonary Hypertension Association (PHA) has a duty to share our knowledge and resources to rid the world of PH. The participants told me that one of the most impactful ways PHA can contribute to fighting PH in Latin America is to share our educational resources for patients and health care professionals.

That gave me the opportunity to share some exciting news that we hadn’t yet announced: this fall PHA will release a Spanish-language version of its popular publication “Navigating PH: A Guide for the Newly Diagnosed.” The 60-page guide, which we published two years ago, is designed for people with PH and caregivers during their first few weeks, months or years after diagnosis.

As part of the discussion, participants asked about other projects and priorities, as well as PHA’s mission. I shared information about our peer support program, which is one of PHA’s priorities, along with awareness, advocacy, research and fundraising.

Participants were particularly interested in learning more about PHA’s participation in research, given the difficulty of recruiting patients for clinical trials in Latin America.

It’s easier to recruit patients for trials in the US. PHA has the ability to vet existing trials and inform our community about criteria for participation through our many channels.

Our research focus extends beyond vetting clinical trials. We also offer research grants to health care professionals who work to improve the understanding of PH, enhance treatment and ultimately find a cure. And we facilitate the use of data from the PHA Registry for studies to improve patient outcomes and quality of care.

The Instagram Live participants were interested in opportunities for collaboration, as well as research. That included information about PHA 2024 International PH Conference and Scientific Sessions, set for Aug. 15-18 in Indianapolis.

Before wrapping up, I offered encouragement to all the leaders working to enhance PH awareness and education in the Americas.

Although changing minds and hearts at times might seem like a daunting and lonely task, it’s important to keep pushing and sharing patient experiences. The paths traced today by current pioneers are the highways of tomorrow’s leaders, and their efforts will not be forgotten or be in vain.

It’s unfortunate that progress is slow, but less than two decades ago, few therapies existed, and patient prognoses were gloomy. We have come a long way since those days, and we have early PH leaders to thank for that.

Please continue sharing your stories and questions with me. As I always, I look forward to hearing from you.

With gratitude and respect,