Hereditary Hemorrhagic Telangiectasia (HHT), also known as Osler-Weber-Rendu Syndrome, is a genetic blood vessel disorder that affects approximately 1.4 million worldwide and yet remains largely undiagnosed. The familial and societal impact of HHT on a national and global scale is immeasurable. For this reason, it is imperative that HHT patients learn as much as they can about this multi-organ disease so they can advocate for their health care.
The National HHT Patient & Family Conference, which takes place every two years, is the perfect opportunity for Cure HHT to share information with patients and physicians so they can take the initiative to make informed decisions about the treatment and management of HHT. Educating our community of patients, physicians, academic institutions, professional associations, and corporate partners about this disease empowers us all to create a future that will allow HHT patients to live a normal life, filled with spontaneity and joy.
This is not a NORD sponsored event. This event is being hosted by a NORD member organization.