The Canadian Heart Patient Alliance was formed by patients and family members affected by high cholesterol and related heart conditions.  We realized there was no patient voice in the struggle for screening, diagnosis and treatment for cholesterol and lipid disorders.  The Chair of CHPA, Durhane Wong-Rieger, in her capacity as president & CEO of the Canadian Organization for Rare Disorders, became involved with patients with “homozygous familial hypercholesterolemia” (HoFH), a very severe form of genetically based high cholesterol with no effective treatments and a very high mortality rate.  Some of the family members with a less severe form known as “heterozygous FH” (HeFH or FH) also suffered from unhealthy cholesterol levels, despite treatment with the highest dosages of mediation available; many had experienced strokes and heart attacks. It was at this time that Durhane suspected her husband, whose father had died of a heart attack at 45 years of age and he himself had undergone double bypass surgery at 54 years, might also have FH.  The condition is estimated to affect about 1 in 300 Canadians but only about 10% have been identified.  Most are simply told they have high cholesterol and are prescribed medication, usually statins and told to reduce intake of fats and exercise.  The medication works for most FH patients, but for others, it does not.  Children with FH who are untreated are at risk for a cardiovascular event in their late 20’s or 30’s. The organization was originally named the FH Canada Patient Network but we realized there were many patients with cardiovascular disease and high cholesterol who are not diagnosed with FH but also suffered from many of the same issues and seeking the same support.  We renamed the organization to include all heart patients.