Dear friends,
This month, PHA encourages people with PH, family members, friends and health care professionals to raise awareness about the link between pulmonary hypertension and heart failure.
Every February, PHA joins the American Heart Association and other organizations to mark American Heart Month. This special month promotes heart health and encourages people to reduce their risk of heart disease.
About 60% of people with PH attribute their condition to left heart disease. About 10% of people with congenital heart disease develop PH. All PH if untreated leads to right heart disease.
Throughout February, join us in spreading awareness about the link between PH and heart failure. Share your tips to improve heart health on Facebook, Instagram, LinkedIn and Bluesky with #OurHearts and #PHAssociation. We also encourage you to share your experiences about PH and heart disease on our Right Heart Blog.
This month, we also will participate in Rare Disease Day on Feb. 28. More than 800 organizations from 70 countries cooperate in a global campaign to raise awareness of rare diseases. Many people with PH also have scleroderma, hereditary hemorrhagic telangiectasia, idiopathic pulmonary fibrosis, sickle cell disease or other rare diseases.
Rare Disease Day provides another opportunity to educate others about PH, the consequences of delayed diagnosis and challenges in accessing appropriate, affordable treatment. You can support PHA’s mission to extend and improve the lives of people affected by PH by raising awareness of these important issues.
Consider sharing your experiences through social media with #RareDiseaseDay and by participating in PHA’s advocacy network. Your personal triumphs and setbacks are powerful tools to educate others about living with PH.
Those of us without PH can do our part, too. Last month, I joined members of several PH associations around the world for PVRI 2025 Rio: Embracing Heterogeneity. As a co-chair of PVRI’s Patient Engagement and Empowerment working group, I presented on the key takeaways of the recent PH Global Patient Survey, a poll many of you participated in and whose shared experiences are helping inform PH care and advocacy policies.
In addition, I was honored to present an abstract about the importance of PH associations, based on results of the same survey. Of the 1,145 survey respondents from around the world, more than half said they belonged to PH associations. The respondents cited information and education (84.8%) as the most useful association services, followed by support groups (51.9%), informative websites (46.4%) and awareness activities (30.7%).
Survey participants also reported additional benefits of PH associations, such as sense of community and purpose, practical support (e.g., legal aid, financial help) and gateway to clinical trials.
Respondents also commented specifically about the greatest value of PH associations:
- “A sense of community and belonging, not feeling alone with a (often invisible) disease, which can feel isolating.”
- “Feeling useful by giving support to others who are earlier on in their PH journey/newly diagnosed.”
- “Organizing fundraisers to advance research and for awareness raising campaigns.”
These words are a powerful reminder of why we do what we do. Raising awareness, fostering support and striving for a cure are monumental tasks, but we are never alone in this fight. Whether we’re talking about heart health, rare diseases or the daily realities of living with PH, every story matters.
Your challenges, your triumphs and your perseverance fuel our mission. Let’s continue to lift each other up, spread awareness and work together for a future where everyone affected by PH has the support and resources they need.
Happy Valentine’s Day to you and your loved ones. Please don’t hesitate to reach out if you have comments or questions. As I always, I look forward to hearing from you.
With gratitude and respect,
Matt J. Granato, LLM, MBA (he/him)
President and CEO
