Skip to Main Content

The Johns Hopkins Hereditary Hemorrhagic Telangiectasia Center of Excellence

The Johns Hopkins Hereditary Hemorrhagic Telangiectasia (HHT) Center of Excellence

For over 25 years, we have been actively treating patients and families 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. Our Center of Excellence is committed to superb patient and family care as well as state-of-the-art research. Our goals are to improve the health of our patients and families as well as to better the lives of those patients in the world that we may never meet.
We empower patients, families, and providers through education and community awareness
We hold clinical and research expertise in a broad range of conditions related to HHT
Our center includes over 30 full-time faculty members specializing in HHT
Our multidisciplinary team partners with patients to provide holistic care based on individual needs

Request an Appointment

New and Current Patients

Sophia Kemble, MSN, RN
HHT Nurse Coordinator
Phone: 410-614-3934
Email: [email protected]

What is 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, telangiectasias, and arteriovenous malformations (AVMs) and affects people of all genders and racial and ethnic backgrounds. The disorder is also sometimes referred to as Osler-Weber-Rendu (OWR) syndrome after the physicians who first described HHT over 100 years ago.

hht graphic showing places that HHT can occur

Today, 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.

Connect with Cure HHT

Cure HHT is a foundation that has consistently been at the center of national and global efforts since its establishment in 1991. It was founded by tenacious and passionate physicians and patient families with the aim of advocating for patients and their families, raising awareness of HHT, guiding and funding critical research, creating lasting collaborations, and encouraging scientists to work on new treatments.

Our Team

Clifford Weiss, M.D.

Director of the HHT Center of Excellence
weiss headshot

Nicholas Rowan, M.D.

Associate Director of the HHT Center of Excellence
Nicholas Rowan headshot

Panagis Galiatsatos, M.D., M.H.S.

Associate Director of the HHT Center of Excellence
Panagis Galiatsatos headshot

Sophia Kemble, MSN, RN

HHT Program Coordinator
[email protected]
default
Bill Morefield, PA
Bill Morefield

Multidisciplinary Specialists

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 of adults and children with HHT.

Refer a Patient

Physicians and new or returning patients may call the HHT Nurse Coordinator Sophia Kemble directly at 410-614-3934 or at [email protected].

Emergencies

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 on-call Interventional Radiology Fellow. The HAL is for physician-to-physician consult only.

  • Hereditary Hemorrhagic Telangiectasia (also known as Olser-Weber-Rendu) is a multi-system vascular dysplasia. It is uncommon but not rare. 
  • Telangiectases and arteriovenous malformations (AVMs) are the characteristic lesions.
  • Location of lesions and severity of symptoms is highly variable and  significantly under-diagnosed in affected individuals.
  • Most commonly affected organs from most to least common are, are the nose, lungs, GI tract, brain, liver, and spine, respectively.
  • 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.
  • The severity of epistaxis or dermal telangiectases does not correlate with the likelihood to have cerebral or pulmonary AVMs.

Current Clinical Trials

Email for more information

Highlighted News and Publications

Contact the HHT Center

Sophia Kemble, MSN, RN
HHT Program Coordinator

The Johns Hopkins Hospital
Interventional Radiology Center
1800 Orleans Street
Baltimore MD, 21287

Phone: 410-614-3934
Fax: 410-367-2325

Email: [email protected]