Overview Disparities in access to and quality of health care are recognized in multiple diseases and may be even more extreme in rare diseases, where there are already barriers to diagnosis and specialized care. In a rare vascular disease, such as hereditary hemorrhagic telangiectasia (HHT), access to early diagnosis and to preventative management are critical for prevention of stroke and other complications. Current International Guidelines recommend that once HHT patients are diagnosed that they be referred to specialized centers for care given the need for specialized care for vascular malformations affecting multiple organ systems. However, this may not be financially or logistically feasible for patients to travel to specialized centers, of which there are only 30 scattered across North America. Furthermore, there may be additional barriers for people with HHT getting care at specialized centers as well as participating in research studies that may be related to disparities and arise due to differences in race, ethnicity, gender and socioeconomic factors. The purpose of this survey study is to identify barriers to referrals, care, and research for patients diagnosed with HHT. The project is being done in collaboration with researchers at the University of Toronto and the patient advocacy group, CureHHT. For more information about HHTTo request a clinic appointment at the UCSF HHT Center of Excellence Affiliated Lab Center for Cerebrovascular Research Principal investigator UCSF Helen Kim, MPH, PhD Professor in Residence External persons Marie E. Faughnan, MD, MSc Professor, University of Toronto Director, Toronto HHT Centre Collaborators External persons Steven Hetts, MD Professor, Department of Radiology. Co-Director, UCSF HHT Center of Excellence Miles Conrad, MD, MPH Clinical Professor, Department of Radiology. Co-Director, UCSF HHT Center of Excellence Seeking collaborators Our project is looking for individuals to join our team. Get in touch if you’d like to learn more. Email Us Support this research Are you excited by the innovative work we’re doing on this project? Learn how your financial support can make the difference in our work. Support
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