Hereditary Hemorrhagic Telangiectasia Center of Excellence
Part of Chest Clinic (Pulmonology)
Leaders in Hereditary Hemorrhagic Telangiectasia (HHT) Care
Our care team draws from breadth of medical and surgical specialties to offer you highly individualized, comprehensive care and support.
300 Pasteur Drive
Stanford, CA 94305
Phone: 650-498-1764
Hereditary Hemorrhagic Telangiectasia (HHT)
- Specialized expertise in identifying and treating this genetic disorder that often goes undiagnosed. Go to Conditions Treated
- Clinical trial opportunities exploring new medial approaches, devices, drugs, or other treatments that may not be available at any other center. Go to Clinical Trials
- Team-based review of your case and consultation with your primary care doctor by our HHT specialists. Go to Your Care Team
- Comprehensive support from the Stanford Health Care Library and other resources to help you and your doctor understand and a plan a course of treatment for your condition. Go to Support Services
- Ease of access with a referral from your doctor Go to Accessing Care
US News & World Report has named Stanford Hospital to the 2019-2020 Honor Roll of best hospitals in the nation.
Stanford Health Care is ranked by US News & World Report for 10 clinical specialties.
Lucile Packard Children’s Hospital is nationally ranked in 10 children’s specialties, including Pediatric Pulmonology.
Stanford partners with Cure HHT whose mission is to find a cure for HHT while saving lives through research, education and collaboration
Hereditary hemorrhagic telangiectasia or HHT (also called Osler-Weber-Rendu syndrome) is a genetically linked disorder that causes abnormalities in the blood vessels. Patients can develop telangiectasia, which is an abnormal dilation or enlargement of the small blood vessels that can be seen on the skin surface.
They may develop an arteriovenous malformation (AVM) in lungs, brain, or liver. AVMs are a tangle of blood vessels that connect the arteries and veins. The development of these abnormal vessels can lead to a variety of symptoms such nosebleeds, gastrointestinal bleeding, and low blood counts.
Most people with HHT function normally, which is why the disorder often may go undiagnosed. If the brain or lungs are involved, it may severe complications may result.
Collaboration with Stanford Medicine Children's Health
Our HHT doctors collaborate with Dr. David Stevenson and the Stanford Children's Health through its Vascular Anomaly Genetic Clinic, providing a unique approach to care.
The location of the telangiectases or AVMs determines the types of symptoms a person with HHT might experience. Symptoms may include:
- Nosebleeds
- Digestive tract bleeding that causes black stools
- Coughing up blood
- Low red blood cell count
- Red or purple spots on the face or hands
- Shortness of breath
- Exercise intolerance or fatigue
- Migraine headaches
- Seizures
- Abdominal pain
- Leg swelling
AVMs in the brain may cause headaches, stroke, or even brain hemorrhage. When AVMs are in the lungs, there is a risk of life-threatening rupture in the lungs, stroke, or development of a brain abscess.
Accurately diagnosing this rare condition
HHT is often undiagnosed or misdiagnosed. The Stanford Health Care HHT Center is one of the few clinics in the nation accredited by CureHHT with extensive experience and expertise in the diagnosis of this condition.
Comprehensive assessment and diagnostic testing may include:
- Physical exam
- Lab tests
- Abdominal ultrasound
- Brain MRI
- Saline contrast echocardiogram
- CT scan chest
- Colonoscopy or upper endoscopy
- Genetic testing
Treatments
Our team at the Stanford Health Care HHT Center of Excellence excels at the treatment of this rare condition, no matter which symptoms you may experience. But first, effective treatment starts with precise diagnosis.
Diagnosing HHT
HHT is suspected in people who have at least three of the following:
- Nosebleeds are spontaneous and occur repeatedly.
- Telangiectases are present in sites such as the lips, inside the mouth, on the tongue, on the fingers, and in the nose.
- AVMs are present in the lung, brain, GI, liver, or spine.
- Family history indicates that a parent, sibling, or child has HHT.
In the late 20th century, researchers discovered that an abnormal gene is the cause of HHT. One abnormal copy of the gene from one parent can cause the disorder. (Therefore, it is what’s known as a “dominant” disorder.) Although the children of this parent have a 50% chance of inheriting the gene, children who do not have it are not carriers.
Genetic testing for HHT is available at only a few centers in the US, such as Stanford Health Care, due to the complexity of the family-based tests.
We also may use one or more of the following to aid in diagnosis:
- Physical exam
- Blood count
- Chest X-ray
- Ultrasound
- MRI
- Contrast echocardiogram (“bubble study”)
- CT scan
- Colonoscopy or upper endoscopy
Choosing the Right Treatment
Our team members from different specialties hold a monthly Vascular Anomaly Case Conference to plan the best treatment approach for each patient. The choice of treatment depends on the location of the condition:
Nose
Actions to help manage nosebleeds may include use of a room humidifying system, nasal sprays and topical gels, and, if necessary, surgery.
Brain
For AVMs in the brain, treatment options that can be used separately or together include surgery, embolization, and stereotactic radiosurgery (a minimally invasive procedure using precisely targeted radiation).
Liver, Stomach, and Intestine
HHT abnormalities in these areas may cause discomfort but may be left untreated unless bleeding develops. If needed, we offer a range of options for gastrointestinal bleeding, including medications and laser treatments. Drug therapy also may be effective for management of liver AVMs.
Hands, Face, and Mouth
We use laser treatments to manage telangiectases on skin in these sensitive areas.
Lung
Lung AVMs are life-threatening and should be treated even before symptoms appear. We can permanently treat lung AVMs using a minimally invasive procedure known as embolization. During embolization, you receive local anesthesia. The specialist makes a tiny cut in the skin, inserts a catheter into the femoral vein in the groin, and then directs the catheter to the abnormal blood vessels in the lung. Next, synthetic coils are placed in the artery feeding the AVM to permanently block blood flow to the AVM. Patients with a single AVM may be treated on an outpatient basis. Two or more AVMS require inpatient treatment.
Clinical Trials
Our doctors are involved in pioneering research to improve diagnosis and treatment for many different conditions. We offer a wide variety of research studies.
As a Stanford Health Care patient, you may be eligible to participate in open clinical trials. Open trials refer to studies currently recruiting participants or that may recruit participants in the near future. Closed trials are not currently enrolling, but similar studies may open in the future.
Your Care Team
Doctors
Otolaryngologist
Otolaryngologists are ear, nose, and throat specialists.
View All {0} OtolaryngologistsInterventional Radiologist
Interventional radiologists treat patients internally using imaging technology to guide procedures.
View All {0} Interventional RadiologistsPulmonologist
Pulmonologists specialize in the diagnosis and treatment of lung conditions.
View All {0} PulmonologistsHematologist
A hematologist provides diagnosis and treatment blood disorders.
View All {0} HematologistsNeurosurgeon
A neurosurgeon is a physician who specializes in the diagnosis and surgical treatment of disorders of the central and peripheral nervous system including congenital anomalies, trauma, tumors, vascular disorders, infections of the brain or spine, stroke, or degenerative diseases of the spine.
View All {0} NeurosurgeonsInterventional Neuroradiologist
Interventional neuroradiologists are radiologists who focus specifically on conditions involving the nervous system, brain, and spine.
View All {0} Interventional NeuroradiologistsDermatologist
Dermatologists specialize in conditions involving the skin.
View All {0} DermatologistsGastroenterologist
Gastroenterologists specialize in conditions of the stomach and intestines.
View All {0} GastroenterologistsStanford is an Academic Medical Center, which is a type of hospital setting where doctors teach the entire spectrum of medical education. Students range from beginning medical students to fully licensed and practicing doctors completing advanced sub-specialty training. Stanford Medicine is a partnership between Stanford University School of Medicine and Stanford Health Care. Since Stanford is a teaching hospital, you can expect to meet many providers and providers in training.
- Attending Physician: a doctor who supervises doctors in training or in medical school
- Fellow: a doctor doing postgraduate level work and specializing in care of patients with specific conditions
- Resident: a doctor who has graduated from medical school and is in training (also called “residency”) here at Stanford. A resident is also called an intern
- Medical Student: a student who is currently enrolled in medical school with the goal of becoming a doctor
Extended Care Team
Aileen Lin, RN, MSN, FNP-BC
Nurse Practitioner
Sheetal Vaghela, RN BSN
Nurse Coordinator
Support Services
We take care of the details, so you can focus on your health and wellness. Our Consultative Medicine experts work as a team to coordinate consultation with you and your doctor. We also offer a wide range of support services to promote healing and improve your quality of life:
It’s easy to access the HHT Center of Excellence with a referral from your doctor. We offer prompt appointments at your convenience.
Frequently Asked Questions
We participate in a wide range of insurance plans. View the list of insurance plans accepted by Stanford Health Care
Have insurance or pre-authorization questions? The Patient Financial Clearance team is available Monday – Friday, 8 a.m. – 5 p.m., to answer your questions. Please call 650-724-4445 or 1-877-291-7335 (toll free).
When choosing a doctor, it’s important to consider the doctor’s clinical training, experience and expertise in a specialized area that matches your health care needs.
You can find the right Stanford doctor for you by using our doctor directory and filtering the results based on a medical category, specialty, or doctor’s last name. View our list of doctors
We offer a number of support services, including support groups, interpreter services, nutrition services, a health library, and a variety of classes and events. Learn more about our support services
In most cases, you will need a doctor referral to be seen at the Hereditary Hemorrhagic Telangiectasia Center of Excellence. If you need a referral, please call 1-866-742-4811 to start the referral process.
Yes, Stanford Health Care offers financial assistance for patients who are uninsured or underinsured. Meet with one of our financial counselors to find the best approach to paying for your health care. Financial counselors are available Monday through Friday from 7:00 a.m. – 6:00 p.m. Learn more about financial assistance services
Managing treatment for HHT is a highly personalized process. Our care team guides you every step of the way, including:
- What to expect and what to bring on the day of your appointment
- Maps, directions, parking, public transit options, and contact information
- Suggested questions to ask your doctor
For your first appointment, you should plan to bring any related test results and your medical history to share with your doctor. Our clinic receptionists will confirm the information you should bring with you prior to your first appointment.
You will also need to have the following information with you when you check in:
- Insurance card
- A form of payment for any co-pays or deductibles
- One form of photo ID:
- Valid state-issued driver’s license
- Valid state-issued ID card
- Valid passport
- Valid U.S. Military ID card
- Valid U.S. Permanent Resident Card
- Completed new patient questionnaire form
The Hereditary Hemorrhagic Telangiectasia Center of Excellence is located at the following address. Self-parking options are available.
Hereditary Hemorrhagic Telangiectasia Center of Excellence
300 Pasteur Drive
Stanford, CA 94305
650-725-7061
Please print, fill out, and return the Medical Record Release Form to your new patient coordinator. The medical release form is an authorization form for external facilities to release medical records to Stanford Health Care.
Always feel free to bring someone with you to your appointments. A family member or friend can help ask questions, remember the information your care team gives you, and provide support.
Write down your questions before your appointment and rank them in order of importance, beginning with the most important ones. If there isn’t enough time to have all your questions answered during your appointment, ask your doctor who you can speak with to get your other questions answered.
You have multiple options when it comes to paying your bill.
- Pay Online:
- You can log in to MyHealth or the MyHealth mobile app to see and pay your bill.
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Contact the MyHealth Help Desk
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- Pay by mail:
- Stanford Health Care
P.O. Box 740715, Los Angeles, CA 90074-0715
Los Angeles, CA 90074-0715
- Stanford Health Care
- Pay by Phone:
- You can call our Patient Billing Customer Service Office
1-800-549-3720.
- You can call our Patient Billing Customer Service Office
For our latest business hours and for more information about billing, visit our Billing page.
Please call us at 650-725-7061 Monday through Friday, 8:30 a.m. to 5:30 p.m. We will help you reschedule or cancel your appointment.
We offer a number of support services, including support groups, interpreter services, nutrition services, a health library, and a variety of classes and events. Learn more about our support services
To determine if a clinical trial is right for you, talk to your doctor. He or she can refer you to a research coordinator for more information on studies that may be right for your specific condition.
You can also find the guidelines for who can participate in a particular clinical trial online. However, it is best to work with your doctor to decide the right care approach for your needs.
Many of our programs are available to international patients.
Our International Medicine Services team can help you find the right doctor, estimate medical costs, book travel, and get you information about Stanford programs and services.
Please call +1 650-723-8561 or email IMS@stanfordhealthcare.org to get started.
For Referring Physicians
PHYSICIAN HELPLINE
Fax: 650-320-9443
Monday–Friday, 8 a.m.–5 p.m.
Stanford Health Care provides comprehensive services to refer and track patients, as well as the latest information and news for physicians and office staff. For help with all referral needs and questions, visit Referral Information.
You may also submit a web referral or complete a referral form and fax it to 650-320-9443 or email the Referral Center at ReferralCenter@stanfordhealthcare.org.
Stanford partners with Cure HHT whose mission is to find a cure for HHT while saving lives through research, education and collaboration.
- Send referrals online
- Place radiology and lab orders
- View referral status
- Access medical records
Hereditary Hemorrhagic Telangiectasia Center of Excellence