Familial hypercholesterolaemia patient support groups and advocacy: A multinational perspective

Atherosclerosis. 2018 Oct:277:377-382. doi: 10.1016/j.atherosclerosis.2018.08.020.


Familial hypercholesterolaemia (FH) is an autosomal-dominant disorder associated with high low-density lipoprotein cholesterol (LDL-C). Left untreated, 50% of men with FH will develop coronary heart disease by the age of 50 and 30% of women by the age 60 [1,2]. It is estimated that the prevalence may be as high as one in 250 people, with most undiagnosed. This article explores the development of advocacy in FH patient organisations, citing examples from Canada, the Netherlands, Spain, the US and the UK as well as the pan-European patient organisation, FH Europe. The article demonstrates that for patient advocacy, the link with medical and scientific expertise is essential to ensure that advocacy for familial hypercholesterolaemia is well-founded and credible and that patient associations are prepared to take a long-term view on achieving improvements in identification and treatment.

Keywords: Advocacy; Avoidable; Children; FH; Familial hypercholesterolaemia; Families; Heterozygous; Homozygous; Patients; Prevent; Undiagnosed.

Publication types

  • Review

MeSH terms

  • Attitude of Health Personnel
  • Cooperative Behavior*
  • Europe / epidemiology
  • Female
  • Genetic Predisposition to Disease
  • Health Communication
  • Health Knowledge, Attitudes, Practice*
  • Health Services Accessibility*
  • Humans
  • Hyperlipoproteinemia Type II / diagnosis
  • Hyperlipoproteinemia Type II / epidemiology
  • Hyperlipoproteinemia Type II / genetics
  • Hyperlipoproteinemia Type II / therapy*
  • Interdisciplinary Communication
  • International Cooperation*
  • Male
  • Middle Aged
  • North America / epidemiology
  • Patient Advocacy*
  • Patient Education as Topic*
  • Patient Participation
  • Phenotype
  • Physician-Patient Relations
  • Prevalence
  • Self-Help Groups*