Hereditary hemorrhagic telangiectasia

Healthcare/Doctors

How do I find a center of excellence in hereditary hemorrhagic telangiectasia?

The best way to obtain the most accurate, current, clear, and comprehensive information is to be seen at a HHT Center of Excellence. These are genetic centers that specialize in the treatment of patients with hereditary hemorrhagic telangiectasia. At most centers, you will see a medical geneticist, genetic counselor, and nurse who work as a team to answer your questions, discuss testing, identify your at-risk family members, and develop a comprehensive evaluation and treatment plan for you. A Center will work with your current doctors to organize the treatment, tests, and specialists you need. The Cure HHT Foundation has information on Centers of Excellence.

References
  • The Cure HHT Foundation website
  • McDonald J, Pyeritz RE. Hereditary Hemorrhagic Telangiectasia. GeneReviews website. Accessed February 23, 2017. https://www.ncbi.nlm.nih.gov/books/NBK1351/
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What doctors do I need to see to manage and treat hereditary hemorrhagic telangiectasia?

What doctors do I need to see to manage and treat hereditary hemorrhagic telangiectasia?

Rare diseases that affect multiple organ systems like hereditary hemorrhagic telangiectasia (HHT) can benefit from a multidisciplinary approach. This approach involves healthcare professionals with specialized skills and expertise. They work together to make treatment recommendations and to provide quality care of individuals and families. Depending upon the specific symptoms in an individual multidisciplinary team may require a specialist who can assess and treat disorders of the blood (hematologist); a specialist who can assess and treat disorders of the ear, nose, and throat (otolaryngologist); a specialist who can assess and treat disorders of the kidneys (nephrologist); a specialist who can assess and treat disorders of the lungs (pulmonologist); a specialist who can assess and treat disorders of the brain and central nervous system (neurologist); a genetic counselor who can help people understand the disease and the implications for the person and other family members; and a metabolic disease specialist.

Talk to your doctor about the best specialists in your area to follow an individual with HHT.

References
  • McDonald J, Pyeritz RE. Hereditary Hemorrhagic Telangiectasia. GeneReviews website. Accessed February 23, 2017. https://www.ncbi.nlm.nih.gov/books/NBK1351/

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