Patient Information
On this page:
- About our Practice
- Request an Appointment
- Online Patient Health Records (MyChart)
- Insurance Information
- About HHT
- FAQs and Additional Resources
About our Practice
The Johns Hopkins HHT Center of Excellence clinics are located throughout the Johns Hopkins medical campus. Our doctors are board-certified and full-time faculty at the Johns Hopkins University School of Medicine with partner expertise in the clinical care of adults and children with HHT.
The Johns Hopkins HHT Center of Excellence is one of the pioneering treatment centers in North America that helps to provide comprehensive coordination of care necessary for treating patients with HHT.
Request an Appointment
Request an appointment by speaking to our medical concierge at 410-464-6555. If you are a new patient, please remember that all medical records must be received before an appointment can be scheduled. Please complete the New Patient Questionnaire and MRI Pre-Screening Form:
- Complete the New Patient Questionnaire (save a print copy for your records)
- Complete the MRI Pre-Screening Form
- Fax notes from your referring physician, otolaryngology physician, or primary care physician along with any diagnostic test results
Mail or fax paperwork to:
Sophia Kemble, MSN, RN
HHT Program Coordinator
Interventional Radiology Center
Sheikh Zayad Tower, Suite 7203
1800 Orleans Street
Baltimore, MD 21287
Attention: HHT Center Nurse Coordinators
Phone: 410-614-3934
Fax: 410-367-2325
Outside images can be shared electronically in AMBRA. There is a charge for archiving and reading all images uploaded into the Johns Hopkins radiology system from outside radiology facilities. Our team cannot review your images without having them uploaded and read at Johns Hopkins. For questions about this billing call 410-735-6740.
Online Patient Health Records (MyChart)
MyChart is a secure website that connects you to your health care team and provides you with the most up-to-date medical information about your care at Johns Hopkins. MyChart is available in English and Spanish. Learn how to access and use MyChart.
Insurance Information
Prior to Scheduling
Please contact your insurance company to let them know you would like to have an HHT evaluation at Johns Hopkins. The following information may be needed:
Dr. Clifford R. Weiss
Director of the JH HHT Center of Excellence
Interventional Radiology Center
Sheikh Zayad Tower, Suite 7203
1800 Orleans Street
Baltimore, MD. 21287
Fax: 410-367-2325
Sophia M. Kemble, MSN, RN, HHT Nurse Coordinator
Phone: 410-614-3934
Referring physician information (the doctor who advised that you be seen at Johns Hopkins for HHT)
Insurance Questions
Please contact the Office of Managed Care/Insurance or call 410-424-4818.
- Although our HHT team providers/physicians work together to care for our HHT patients, each provider/physician may or may not be covered by your insurance. Prior to your visit, verify coverage for each provider/physician and any recommended diagnostic testing.
- There is a charge for archiving and reading on all images uploaded into the Johns Hopkins radiology system from outside radiology facilities. Our team cannot review your images without having them uploaded and read at Johns Hopkins.
- For questions about this billing call 410-735-6740.
- Unfortunately, if you do not have the appropriate referrals or pre-authorization for testing, your clinic appointment or test may be canceled. Please double check this before arriving for your appointments.
- Johns Hopkins does not accept out-of-state medicaid.
About HHT
Hereditary Hemorrhagic Telangiectasia (HHT) is a genetic disorder of the blood vessels and affects approximately 1 in 5,000 people. HHT is characterized by nosebleeds, telangiectasia, and arteriovenous malformations (AVMs), it affects males and females from all racial and ethnic backgrounds. The disorder is also sometimes referred to as Osler-Weber-Rendu (OWR) after the physicians who first described HHT over 100 years ago.
More than a century later, HHT remains a disease that is often misdiagnosed or misunderstood. Despite tremendous progress to raise the worldwide awareness of HHT, many patients and clinicians do not fully understand all of the disease manifestations.
HHT Frequently Asked Questions
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HHT is a complex disease that frequently goes undiagnosed and untreated, and it can affect multiple organ systems. Therefore, having a multidisciplinary team of providers specializing in many areas of the body is important for proper diagnosis and treatment.
The Johns Hopkins HHT Center of Excellence has a team of physicians who have the interest and expertise necessary for the diagnosis, treatment, and monitoring of HHT. -
Being evaluated for HHT is a process that may involve multiple physicians and diagnostic tests. Physicians on our team have clinic appointments available on different days and times. We attempt to bundle your physician clinic appointments together with testing, and prefer to minimize your time away from home if possible. However, insurance authorization for clinic appointments and diagnostic tests may cause a delay in the process. Please call at least one month in advance to plan a visit for the following month.
To avoid delays related to insurance coverage, we encourage you to determine if Johns Hopkins is in network with your insurance company and what your policy will cover.
Diagnostic testing at Johns Hopkins cannot be scheduled unless pre-authorization is received from your insurance company.
Clinic appointments can be scheduled, but if your insurance has not authorized the appointment in advance you will be asked for payment on the day of your visit.
If you are in need of financial counseling services, please call 410-955-4448. -
Being evaluated for HHT is a process that may involve multiple physicians and diagnostic tests. Doctors on our team have clinic appointments available on different days and times. We attempt to bundle your physician clinic appointments together with testing, and prefer to minimize your time away from home if possible. However, insurance authorization for clinic appointments and diagnostic tests may cause a delay in the process. Please call at least one month in advance to plan a visit for the following month.
To avoid delays related to insurance coverage, we encourage you to determine if Johns Hopkins is in network with your insurance company and what your policy will cover.
Diagnostic testing at Johns Hopkins cannot be scheduled unless pre-authorization is received from your insurance company.
Clinic appointments can be scheduled, but if your insurance has not authorized the appointment in advance, you will be asked for payment on the day of your visit.
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Records should be requested from your primary care physician, otolaryngologist (ENT), neurologist, gastroenterologist, and hematologist. Please also send notes from your last history and physical that document a family history of HHT and current medical problems. All discharge summaries from emergency department visits should also be sent.
Please provide any notes from your last history and physical, particularly if they report a family history of HHT. Please also provide any notes indicating current medical problems and any discharge summaries from acute care settings (e.g., emergency department, urgent care).
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Yes, with exceptions.
If your brain MRI was done with contrast less than five years ago, our neuroradiologist can review it. If the quality of the brain MRI is adequate to determine you have no brain AVMs, you will not need to have a repeat brain MRI with contrast.
We request our HHT patients return every three to five years or sooner if worrisome symptoms develop. If your last chest CT with contrast was less than three years ago, you may submit that for review.
Once we receive electronic copies of your images, they will be submitted to the eRadiology Center to be reviewed by our HHT team physicians. Your images will also be read by a physician in our radiology department. There are charges for processing and reading your images. You may submit this bill to your insurance company. For details about these costs, please call the eRadiology Center at 443-287-7378.
If you transfer your HHT care to another facility or would like a copy of your images on CD, please call the e-Radiology Customer Service Center at 443-287-7378.
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Yes. Please call Genetic Counseling Intake at 410-955-3071.
For more information on HHT and genetics, access FAQs here.
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Children of a parent diagnosed with HHT need screening as soon as possible. Our HHT team includes many pediatric specialists who will be consulted on an as-needed basis. A pediatric pulmonologist with special interest and experience in HHT will perform initial screening for HHT and make referrals to other pediatric specialists on the team as needed.
Our pediatric pulmonologist works closely with a team of Child Life Specialists who will help assess and support your child’s understanding of HHT and the screening process in an age-appropriate way that reduces anxiety and develops positive coping strategies.
A Child Life Specialist will work with you to develop a plan for the screening process that will provide a positive experience for your child and family, as well as excellent diagnostic information for the medical team. Your child’s initial understanding and comfort related to hospital visits and testing is extremely important to our team because monitoring and on-going medical care is necessary for parents and their children with HHT.
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Prior to conceiving, a comprehensive HHT evaluation is recommended. Our HHT physicians are available for consult by your obstetrician and pediatrician as pregnancy, delivery and newborn baby care may need to be modified to meet the needs of a mother with HHT and her newborn baby.
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Your HHT physicians as well as the Cure HHT international foundation are invaluable resources that can provide you with the most up-to-date information on interventions and research.
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Looking for nearby lodging? Find information about our accommodations
offering discounted rates for Johns Hopkins patients and family members.
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