HHT is a multi-system blood vessel disorder that can affect various organs in the body. The HHT Clinical Guidelines were published in the Journal of Medical Genetics - this is the most comprehensive document concerning standardized care for HHT patients. Many of these findings, along with areas of special interest, are summarized in the following documents:
The HHT Foundation International, Inc. recommends that HHT patients receive evaluation and treatment at an HHT Center of Excellence. It is our experience that if HHT patients do not receive care from recognized experts in this rare disorder, manifestations of HHT are often missed or mismanaged. In general, an evaluation at an HHT Center of Excellence is recommended every 5 years, or when treatment is indicated or under consideration.
For many reasons, it is important that the HHT Diagnosis is part of a patient's medical history - make sure that ICD10 Code I78.0 or ICD9 Code 448.0 is utilized for all clinically or genetically diagnosed patients.