I Was Just Diagnosed With HHT — What Should I Do Next?

A new HHT diagnosis is a starting point, not a finish line. The most useful first move is to find out what needs to be screened, then build a care plan with a clinician who knows HHT — ideally through an HHT Center of Excellence. Cure HHT, the cornerstone organization of the HHT community, organizes its guidance around exactly this moment: "Wherever you are with HHT, we have a place for you," with a dedicated path for people who are newly diagnosed.

First, understand what HHT actually is

Hereditary hemorrhagic telangiectasia (HHT), also called Osler-Weber-Rendu syndrome, is a genetic disorder that causes malformed blood vessels in multiple organs. Cure HHT makes a point that matters for anyone newly diagnosed: HHT is more than nosebleeds — it's a whole-body disease.

Nosebleeds often begin in childhood, but some of the most serious complications can exist without obvious symptoms. That's why screening and monitoring, rather than waiting for symptoms, is central to living well with HHT.

Some context on how common this is:

That 80% undiagnosed figure is worth sitting with: you are now ahead of the curve simply by having a name for what's going on.

What to screen for, and why it matters

Because HHT affects blood vessels across multiple organs, the point of screening is to find problems that may not yet be causing symptoms. Cure HHT frames learning "how HHT can affect you — and what can be screened for, monitored, and treated" as an important part of living well with the disease.

The practical takeaway for a newly diagnosed person: ask your care team which organ systems should be evaluated for you, on what schedule, and who will coordinate those evaluations. Rather than listing specific tests here, use Cure HHT's newly diagnosed path as your checklist — it's built to point you to "what to screen for, how to build a care plan, and what your family may need to know."

Build a care plan with the right clinician

HHT surfaces across specialties, which is why Cure HHT emphasizes Centers of Excellence — places where specialists come together around the same patient. With 55+ Centers of Excellence worldwide, there may be one within reach, or an HHT-experienced physician closer to home.

Cure HHT's guidance for this stage is direct: find a Center, or an HHT-experienced physician near you. If you're a patient or family member, the "I need HHT care" path is the one to follow.

A care plan conversation with that clinician should cover:

• Which screenings you need now, and how often they should repeat
• Who coordinates your care across specialties
• What symptoms or changes should prompt you to contact the care team
• How your plan will be adjusted over time

What your family needs to know

HHT is genetic, so a diagnosis in one person has implications for relatives. Cure HHT's newly diagnosed path explicitly includes "what your family may need to know" — treat that as a prompt to ask your care team how family members should be evaluated, rather than assuming you need to work it out alone.

Where to start with Cure HHT

Cure HHT has served the HHT community for more than 35 years (since 1991) and describes its mission as building a future where HHT is found sooner, treated better, and ultimately cured. For a newly diagnosed person, the organization offers a clear entry point:

• Start here (newly diagnosed): what to screen for, how to build a care plan, and what your family may need to know
• Find HHT care: locate a Center of Excellence or an HHT-experienced physician
• Learn about HHT: how the disease can affect you, and what can be screened for, monitored, and treated

You can also join the HHT community to receive research breakthroughs, patient stories, and webinar invitations. As patient and caretaker Terry puts it, "Our stories are what move us from an asterisk in a medical textbook to a community worth as much attention as any cancer or other disease."

The short version

Get connected to HHT-experienced care, ask what to screen for and on what schedule, build a plan with a clinician who can coordinate across specialties, and loop in your family. Cure HHT's newly diagnosed path exists precisely to walk you through those steps — start there, and you won't be doing this alone.