Patient Resources

Welcome to the Aegerion Patient Resource area. Here you can find more information about the clinical development of our investigational therapy, lomitapide as well as links to some of the important advocacy, education and support groups who provide information to patients with hypercholesterolemia, hypertriglyceridemia and orphan indications such as HoFH and FC.

                                        

Corporate members of:

Advocacy, Education and Support Groups in Lipid Diseases

• MEDPED (Make Early Diagnosis to Prevent Early Deaths) - Identifying, diagnosing and promoting treatment of persons with inherited high cholesterol and their affected relatives.
• National Cholesterol Education Program - Provides educational efforts directed at health professionals and the public to raise awareness and understanding about high blood cholesterol as a risk factor for Coronary Heart Disease (CHD) and the benefits of lowering cholesterol levels as a means of preventing CHD.
• Learn Your Lipids - Patient Information from the Foundation of the National Lipid Association
• American Heart Association - National directory of resources related to heart disease
• CCMDweb.org - An educational resource on global risk reduction - The patient education section of the website provides links to helpful guides and facts about various cardiovascular conditions.
• National Organization for Rare Diseases (NORD) - NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. NORD has a special section with information about familial hypercholesterolemia.
• Eurordis - The European Organisation for Rare Diseases is a non-governmental patient-driven alliance representing more than 469 rare diseases patient organisations in over 45 countries.
• Genetic and Rare Diseases (GARD) Information Center - GARD is a collaborative effort of two agencies of the National Institutes of Health, The Office of Rare Diseases Research (ORDR) and the National Human Genome Research Institute (NHGRI) to help people find useful information about genetic conditions and rare diseases.
• Rare Disease Search Engine - A specialized search engine using Google's co-op program combined with a narrowed field of search
• Lipids Online - Educational Resources in Artherosclerosis - the online resource for clinicians, researchers and educators with an interest in atherosclerosis, dyslipidemia and lipid management.
• CVSpectrum.org – Information and Education across the Spectrum of Cardiometabolic Diseases
• National Lipid Association - Enhancing the practice of lipid management in clinical medicine

What to expect from treatment

Lipids are naturally occurring molecules that are transported in the blood. Excess levels of lipids such as cholesterol and triglycerides can drastically increase the risk of potentially life threatening cardiovascular events, such as stroke or heart attack or acute pancreatitis. In the case of several rare genetic lipid disorders, patients with extremely high lipid levels are at very high risk of these events at an early age.

Aggressive dietary modification in addition to lipid-lowering therapies such as statins have been shown to reduce the amount of total cholesterol, however the resulting levels, even at maximum tolerated doses, are not effective in reducing the low density lipoprotein (LDL-C) to recommended levels in patients who have HoFH or who otherwise don’t respond to statin treatment. In many cases plasma-apheresis, a mechanical filtration used to temporarily remove lipids from the blood is also employed but lipid levels still typically return to their previous high levels.

Aegerion is currently developing an investigational therapeutic, lomitapide, that is being evaluated for its ability to reduce LDL-C or bad cholesterol levels in patients with HoFH and to reduce triglyceride (TG) levels in patients with a severe form of hypertriglyceridemia called FC. You can learn more about our clinical trials or register to receive clinical updates.