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Provider Information

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 particular expertise in the clinical care for adults and children with HHT.

The Johns Hopkins HHT Center of Excellence is one of the pioneering treatment centers in North America that help to provide comprehensive coordination of care necessary for treating patients with HHT.

Refer a Patient

Patients may call our medical concierge at 410-464-6555. Physician offices may call the HHT coordinator, Gina M. Robinson, MSN, RN/HHT directly at 410-502-3628.

Emergency

To speak with one of our HHT experts about a patient, please call the Hopkins Access Line (HAL) at 410-955-5000 and page the Interventional Radiology Fellow on call. A member of our team is available 24/7. Request consultation with Dr. Clifford Weiss, HHT Center Director. The Hopkins Access Line is for physician-to-physician consult only.

HHT Quick Facts for Health Care Professionals

  • Hereditary Hemorrhagic Telangiectasia (also known as Olser-Weber-Rendu) is a multi-system vascular dysplasia. It is uncommon but not rare. Approximately 1.2 million people worldwide have HHT.
  • Telangiectases and arteriovenous malformations (AVMs) are the characteristic lesions.
  • Location of lesions and severity of symptoms is highly variable and it is significantly under diagnosed in affected individuals.
  • Most commonly affected organs are the nose, lungs, GI tract, brain, liver and spine in that order.
  • HHT is an autosomal dominant genetic disorder. Denovo mutations are rare. A targeted family history shows almost all cases to be familial.
  • HHT is heterogenic. Defects in at least three genes cause HHT.
  • 90-95% of individuals with HHT will develop epistaxis by adulthood but severity varies from infrequent and minor to daily and severe.
  • 90-95% develop at least a few small telangiectasia on the face and/or hands by middle age.
  • 20-25% develop significant gastric or intestinal bleeding but rarely before age 50 unless affected with juvenile polyposis in conjunction with HHT.
  • 30-50% have pulmonary arteriovenous malformation (AVM). These are largely congenital and pose significant risk.
  • 5-20% have at least one cerebral AVM. These are congenital and pose significant risk.
  • Hepatic AVM are relatively common and approximately 5% are symptomatic.
  • The severity of epistaxis or dermal telangiectases does not correlate with the likelihood to have cerebral or pulmonary AVMs.

International guidelines for the diagnosis and management of hereditary haemorrhagic telangiectasia.

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