Hereditary hemorrhagic telangiectasia type 4
Other Names for this 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.
- The Centers for Mendelian Genomics program is working to discover the causes of rare genetic disorders. For more information about applying to the research study, please visit their website.
- 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