Cure HHT (www.curehht.org) is the primary patient education and advocacy group internationally.
There are designated HHT Centers of Excellence that provide multidisciplinary care to HHT patients. The directory of HHT centers can be found here: https://curehht.org/understanding-hht/get-support/hht-treatment-centers/
Rare Coagulation Disorders Resource Room, an extension of the RBDD Registry (eu.rbdd.org), was developed in collaboration with the Indiana Hemophilia & Thrombosis Center (www.innovativehematology.org).
The Resource Room serves as a platform to promote international collaboration to increase knowledge of these very rare disorders and to improve the care of affected individuals. The international RBDD mission, under the leadership of Dr. Peyvandi, will continue to be expanded over time.
The Resource Room thanks all contributing authors of the website articles that have made this valuable information available to the global community of both individuals affected with rare coagulation disorders and their healthcare providers.
