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June is HHT Awareness Month

For individuals and families affected by Hereditary Hemorrhagic Telangiectasia (HHT), awareness and support are vital. June is our opportunity to come together, share our experiences, and educate others about this often-underdiagnosed condition. Explore resources, connect with the community, and find out how you can help amplify the voices of those living with HHT.

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Kate is a teacher, an avid swimmer, and addicted to green tea lattes. She loves traveling, dogs, and dreams of having a family.

Kate lives with HHT.

Imagine living with a disease that has no FDA-approved treatment or cure, day-in and day-out.

Kate plans her paid time off around infusion dates and specialty care appointments, often a year in advance. She has to take a lunchtime break in her car to catch up on rest due to low iron fatigue. Kate has a surgery scheduled to treat some of her pulmonary AVMs, but she’s worried about planning for a family with other AVMs that are not yet treated.

And while Kate may not be real, experiences like hers are. Cure HHT works every day to ensure doctors, researchers, lawmakers, and the general public can see beyond and understand HHT is so much more than a nosebleed.


Michael is a retired contractor who loves fishing, good food, and music. He loves showing off pictures of his grandchildren and wants to take a cruise somewhere warm.

Michael lives with HHT.

Imagine living with a disease that takes 27 years on average to diagnose.

Michael was diagnosed with HHT at 50 and most of his physicians have never heard of HHT, let alone treated it. He spent the majority of his life thinking that nosebleeds were something that ran in his family. It took one of his family members going through a medical crisis to finally identify this condition he’s had his whole life. While visiting an HHT Center of Excellence he learned that his chronically low hemoglobin was also caused by severe GI bleeding. He doesn’t want worsening bleeding to keep him from making memories with his grandchildren.

And while Michael may not be real, experiences like his are. Cure HHT works every day to ensure doctors, researchers, lawmakers, and the general public can see beyond and understand HHT is so much more than a nosebleed.


Noah and Paige are twins, but they don’t think they’re anything alike. Noah likes to ride his bike while Paige helps their mom plant flowers in their garden. They may share a birthday, but they don’t like sharing toys.

Paige lives with HHT.
Noah loves her.

Imagine inheriting a disease that is twice as common as hemophilia but only has 15 Centers of Excellence compared to 140 federally funded hemophilia centers.

Noah and Paige met all the same milestones: rolling over, crawling, laughing, but as they got older, Paige began to have the same red bumps and nosebleeds as her dad. After driving out-of-state to a children’s hospital, both Noah and Paige were tested for HHT. While Paige had a genetic marker for the disease, Noah doesn’t. He makes sure she’s never alone during hospital stays, even when it’s the perfect day to ride his bike.

And while Noah and Paige may not be real, experiences like theirs. Cure HHT works every day to ensure doctors, researchers, lawmakers, and the general public can see beyond and understand HHT is so much more than a nosebleed.

Community Stories

Photograph of a young girl named Harper smiling in front of a white board that says "Congrats Harper" with a drawing of lungs

More Than A Nosebleed: In Loving Memory of Harper

More Than A Nosebleed: Buddy’s Story

Photograph of a young girl named Collyns in lying in a hospital bed posing with friends.

More Than A Nosebleed: Collyns’ Story

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