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The Johns Hopkins Hereditary Hemorrhagic Telangiectasia Center of Excellence

Patient Information

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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

Man talks with doctor

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.

Family talks with doctor

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

HHT Body

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