Familial Hypercholesterolemia – Patient Engagement Forum

Co-leads:

  • Liam Brunham 
    University of British Columbia 
  • Fred Hazen
    St. Paul's Hospital

Team Members:

  • Lubormira Cemakova
    BC FH Registry 
  • Dr. Durhane Wong-Rieger
    Canadian Organization for Rare Diseases

Trainee:

  • Dr. Miles Marchand
    University of British Columbia

Familial Hypercholesterol (also called FH) is the most common inherited form of high cholesterol, and affects 1 in 250 British Columbians. FH leads to lifelong elevation in blood cholesterol and up to 10-times increased risk for developing heart disease, which often occurs at a young age. Most patients with FH have not been diagnosed, and may not be receiving appropriate treatment.

Research into FH has advanced rapidly over the past several years, and we now know significantly more about the genetic causes of FH, how to diagnose it, and the best available treatments. Communicating and disseminating the results of this research to patients and their family members are critical to translate these research findings into improvements in care of these patients. The purpose of this proposal is to hold a patient forum on FH which will include lectures from physicians, nurses, dieticians, genetic counsellors and patients, as well as interactive small group sessions.

The goals of the forum are to disseminate research advances to patients with FH and empower patients to become advocates for the community with FH. With this funding we will be able to offer a number of travel grants to support patients from outside Vancouver to attend.