HHT Awareness Month: Rare Connections Between HHT & PAH

June is HHT Awareness Month, and this year it looked a little different for me.

When we think of awareness, we often think about educating the public, advancing research, and encouraging earlier diagnosis—and it absolutely is. But this month reminded me that awareness takes many forms. Sometimes it’s sharing your story. Sometimes it’s supporting research. And sometimes it’s creating opportunities for people living with a rare disease to find one another.

If you’ve followed my journey for a while, you’ve probably heard me talk about Hereditary Hemorrhagic Telangiectasia (HHT) and how it runs in my family. We’ve traced it back through multiple generations on my dad’s side. Because of that family history, HHT was never something unknown to me. I underwent genetic testing as a young teenager and was formally diagnosed with HHT, with the ALK-1 mutation.

Growing up, I always knew HHT was part of my family’s story. Although my second cousin, Marla, had also been diagnosed with PAH years earlier, it wasn’t until I received my own PAH diagnosis in 2018 that I truly understood the relationship between the two conditions and just how rare it is to live with both.

HHT affects approximately 1 in 5,000 people. While an estimated 10–15% of individuals with HHT develop pulmonary hypertension (PH), less than 1% develop pulmonary arterial hypertension (PAH), making this overlap exceptionally rare.

Because of that rarity, for many years Marla was the only person I knew living with both HHT and PAH. After I was diagnosed with PAH, it was reassuring to know there was someone in my own family who had already navigated both diseases and was living her life. At the same time, it highlighted just how incredibly rare this overlap is. Beyond Marla, there simply wasn’t anyone else I knew of who truly understood what it meant to navigate these two complex diseases.

Over the years, I slowly began finding others.

In 2024, I traveled to France for the HHT International Scientific Conference, where I met Julia—the second person I’d ever met living with both HHT and PAH. We immediately connected over our shared experiences, including the unique challenges (and frustrations!) of living with both conditions and navigating pump therapy.

My third person was Monica, whom I met at the O2 Breathe Walk she organized here in Southern California in 2025. Our journeys were almost the opposite of one another. I was diagnosed with HHT first and later PAH, while Monica was diagnosed with PAH before later learning she also had HHT.

While Marla, Julia, and Monica were the only people I had ever met in person living with both HHT and PAH, earlier this year my dad connected me with Allison, another person around my age living with both conditions. We found ourselves texting about everything from medications and treatments, to work, travel, and navigating everyday life with PAH. Although we had not yet met in person, it was a reminder that this community of PAH HHT patients existed elsewhere — I just hadn’t found it yet.

That made what happened at this year’s Pulmonary Hypertension Association (PHA) International PH Conference in Dallas, Texas in the beginning of June, all the more meaningful.

I was excited for the opportunity to finally meet other people living with PH. Outside of the few people I’ve already mentioned, most of my interactions with other PH patients (not just PAH/HHT patients) had been virtual. The conference brought so many of us together in one place, giving me the opportunity to finally meet those virtual connections in person—including Allison—while also meeting so many new people as well. There is something incredibly special and meaningul about being surrounded by people who understood firsthand what it means to live with a condition you have yourself.

But even within this already rare community, there was an even rarer one.

Through the generous support of Diagonal Therapeutics, several individuals living with both HHT and PAH, including myself, were able to attend this year’s PH Conference. During our time there, patients living with both conditions, along with some of their caregivers and family members, met with the Diagonal team and learned more about its upcoming clinical trial, shared experiences living with both conditions, and contributed to future research by donating blood samples.

Together, the PH Conference and Diagonal Therapeutics created an opportunity for about 15 people with HHT and PAH to come together in one place. This may sound like such a small number, but for such a rare subgroup of two already rare diseases, this is huge. For some, it was the first time they had ever met another person outside of their own family living with both conditions. For many, it was the first opportunity to connect in person with someone else living with both conditions.

One of my favorite moments happened outside of the conference sessions. My dad hosted a happy hour where many of us gathered around one table. We talked about nosebleeds, telangiectasias, treatments, medications, and the unique challenges that come with living with both HHT and PAH—conversations that very few people truly understand. But before long, we were talking about our families, careers, travel, hobbies, and everyday life. It was a reminder that while our rare diagnoses brought us together, they don’t define who we are. It makes that less than 1% statistic feel less lonely as well. 

That’s what HHT Awareness Month looked like for me this year. I went from having met just three people in my lifetime living with both HHT and PAH in person, to connecting with triple that in a single weekend. For a community this rare, those connections are something I’ll never forget.

Awareness is about education. It’s about research. It’s about advocacy and earlier diagnosis. But it’s also about connection. It creates opportunities for small pockets of people affected by rare diseases to find one another, learn from one another, support one another, and realize they’re part of a community that’s stronger than any one diagnosis.

This June, I’m grateful for the researchers working toward better treatments, the advocacy organizations raising awareness, and those who recognize that even the smallest patient communities deserve to be seen, supported, and included. Because sometimes the greatest impact of awareness isn’t just what people learn—it’s the connections that are made because of it.

Happy HHT Awareness Month!

#raredisease #hht #pah #ph #pulmonaryarterialhypertension #hereditaryhemorrhagictelangiectasia #hhtawarenessmonth