Refer a Patient
A referral to an HHT Center of Excellence gives a patient coordinated screening across every organ system hereditary hemorrhagic telangiectasia (HHT) affects, in one place, from a team that sees the condition regularly.
Indications
When to refer
Refer when any of the following is present. A definite clinical diagnosis is not required, and suspicion alone is sufficient reason.
- Three or more Curaçao criteria, which establishes a definite clinical diagnosis: spontaneous recurrent epistaxis, mucocutaneous telangiectases at characteristic sites, visceral arteriovenous malformations, and a first-degree relative with HHT.
- Two Curaçao criteria, which makes the diagnosis possible and warrants evaluation rather than reassurance.
- A confirmed pathogenic variant in ENG, ACVRL1, SMAD4, or GDF2, whether or not the patient is symptomatic.
- A first-degree relative with HHT. Inheritance is autosomal dominant, so each child of an affected parent has a 50% chance of having the condition and should be evaluated.
- Pulmonary arteriovenous malformation of unclear cause, which is associated with HHT in the large majority of cases.
- Brain abscess, paradoxical embolus, or ischemic stroke without an identified source, particularly in a patient with a history of nosebleeds.
- Recurrent epistaxis with iron deficiency anemia that has not responded to routine management.
- Pregnancy or pregnancy planning in a patient with known or suspected HHT, where unscreened pulmonary malformations carry particular risk.
Where you are sending them
What a Center of Excellence provides
Centers are accredited by Cure HHT and reviewed against defined standards for multidisciplinary care. A referral buys your patient four things that are difficult to assemble one specialty at a time.
Screening across every affected organ
Coordinated evaluation of the lungs, brain, liver, and gastrointestinal tract, planned together rather than as a series of unconnected referrals the patient has to chase.
Genetic testing and counseling
Testing interpreted in the context of the family history, with cascade screening offered to at-risk relatives. One diagnosis routinely identifies several more.
Interventional treatment
Embolization of pulmonary arteriovenous malformations, management of epistaxis, and treatment of anemia, by teams who perform these procedures in HHT patients regularly.
Long-term follow-up that comes back to you
A surveillance schedule returned to the referring clinician, so ongoing care stays local wherever it can and the center is used for what only it can do.
Four steps
How to make the referral
Each center manages its own intake, so the process varies slightly. The steps below apply nearly everywhere.
Identify the nearest center
Use the Cure HHT directory to find centers by location, and check whether the center treats adults, children, or both.
Contact the center directly
Listings include the intake contact. Some centers accept patient self-referral, and others require a clinician referral.
Send supporting records
The list below covers what the intake team will ask for. Sending it up front usually saves a round of correspondence.
Tell the patient what to expect
A first visit usually involves several specialties and may span more than one day. Patients plan better when they know that in advance.
What to include with the referral
- A family history covering at least three generations, noting nosebleeds, anemia, stroke, and unexplained early death.
- Documentation of epistaxis frequency, severity, and any treatments already attempted.
- Recent complete blood count, ferritin, and iron studies.
- Any prior imaging of the chest, brain, abdomen, or liver, including the images themselves rather than reports alone.
- Genetic testing results, if testing has been performed.
This page is written for healthcare professionals and reflects current international consensus guidance for the diagnosis and management of HHT. It does not replace clinical judgment or center-specific protocols.