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Individuals and families affected by rare medical conditions might look to nonprofit support and advocacy groups for different reasons. Some may want to find other people who understand how having the condition affects their lives. Others are searching for medical information, treatment options, the latest research, or financial aid resources. This guide will help you learn more about the different types of information and services offered by nonprofit support and advocacy groups.

Trying to find an underlying diagnosis for many conditions can be a very long and frustrating experience. With more rare conditions, a diagnosis can often take many years. Although this can be incredibly difficult, the following information may help you navigate through the process of trying to obtain a diagnosis.

Many individuals want to know about healthcare professionals or researchers who have knowledge of their conditions. When a condition is rare, it can be difficult to find someone who has seen many cases. Although there is no list of experts in rare diseases, the guidelines below include several ways to identify healthcare professionals who have experience with a particular condition.

iCURE supports mentored research experiences for students and scientists in the NCI research community. iCURE encourages the participation of underrepresented individuals.

If you have been diagnosed with high blood cholesterol, it is important that you continue your treatment. Follow-up care can vary depending on your cholesterol levels, your risk of having a cardiovascular complication such as a heart attack or a stroke, and your response to treatment.

High blood cholesterol is treated with heart-healthy lifestyle changes and medicines to control or lower your high blood cholesterol. Lipoprotein apheresis is a procedure that can be used to treat familial hypercholesterolemia.

Your doctor may diagnose you with high blood cholesterol based on your medical and family history, your physical exam, or whether you have consistently high low-density lipoprotein (LDL) cholesterol levels on repeat lipid panel blood tests. Your doctor may do more tests to see if other medical conditions may be causing high blood cholesterol.

High blood cholesterol does not cause specific symptoms. But people who have very high blood cholesterol may show signs. Undiagnosed or untreated high blood cholesterol can lead to serious complications such as heart attack and stroke.

Your doctors will order routine lipid panel blood tests to screen for high blood cholesterol. Learn about heart-healthy lifestyle changes that your doctor may recommend to help you prevent high blood cholesterol.

Dr. Volkow discusses how taking medicine in a way that is different from what the doctor prescribed can be dangerous.