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Diseases

Genetic and Rare Diseases Information Center (GARD)

Hereditary hemorrhagic telangiectasia


Other Names for this Disease
  • HHT
  • Osler Weber Rendu syndrome
  • ORW disease
  • Osler-Rendu-Weber disease
  • Rendu-Osler-Weber disease
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Research

Clinical Trials & Research for this Disease

  • ClinicalTrials.gov lists trials that are studying or have studied Hereditary hemorrhagic telangiectasia. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

Patient Registry

  • The Brain Vascular Malformation Consortium is a team of doctors, nurses, research coordinators, and research labs throughout the U.S., working together to improve the lives of people with familial cavernous malformations, Sturge-Weber syndrome, hereditary hemorrhagic telangiectasia through research. The Brain Vascular Malformation Consortium has a registry for patients who wish to be contacted about clinical research opportunities.

    For more information on the registry see: http://rarediseasesnetwork.epi.usf.edu/registry/index.htm
Other Names for this Disease
  • HHT
  • Osler Weber Rendu syndrome
  • ORW disease
  • Osler-Rendu-Weber disease
  • Rendu-Osler-Weber disease
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.