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Goals, Mission & Vision


  • Enroll a large group of patients with SWS, CCM and HHT into observational cohort studies (where subjects are followed over time and clinical, laboratory and radiological data – as well as blood samples specifically for research – are collected at regular intervals).
  • Conduct clinical trials of promising new drugs for the treatment of brain vascular malformations.
  • Establish a patient contact registry with our patient advocacy groups.
  • Discover new laboratory markers of disease that will lead to better treatment and deeper scientific understanding of the causes of these diseases.
  • Develop improved methods for studying brain vascular malformations.
  • Identify relevant outcome measures, including patient-reported quality of life, to be used in clinical trials.
  • Work with the patient advocacy groups to help those patients who wish to be involved in research connect with those doctors conducting the research.
  • Help other scientists do more research on brain vascular malformations by providing specimens and clinical data from the BVMC for analysis.
  • Attract and train new, young investigators in the field of brain vascular malformations and rare diseases.


The mission of the Brain Vascular Malformation Consortium is to conduct informative and transformative clinical research and trials to learn more about SWS, CCM, and HHT. Our goal is to develop new and better treatments to improve the care of patients living with brain vascular malformations. We also seek to provide up-to-date information for patients to help them manage their disease and to assist in connecting patients with support groups, expert doctors, and clinical research opportunities.