Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
In a study published in the scientific journal Atherosclerosis, a team of researchers sought to screen patients in Japan who had abnormally high LDL cholesterol (LDL-C) and a suspected diagnosis of familial…
Heterozygous familial hypercholesterolemia (HeFH) can be difficult to control on available standard-of-care cholesterol-lowering medications. Therapeutic interventions are needed to reduce high LDL cholesterol levels and improve health and quality-of-life for…
The Benefits of Genomics The use of genomics in health systems is becoming more of a standard practice. Health systems have been partnering with genomics databases to collect patient data.…
The 2019 FH Summit was a productive and moving event that brought patients and researchers together from all over the world. Katherine A. Wilemon, founder and CEO of the FH…
According to a story from Healio, a recent presentation featured at the FH Foundation Global Summit was a stark reminder of the need for improved treatment for patients with familial…
Diagnosis, Treatment, and Adherence There are many factors necessary for an individual to be able to thrive with a serious medical diagnosis. First, they must receive the correct diagnosis so…
Geisinger Health System is based out of Pennsylvania. They have recently initiated a novel program that has goals to make DNA sequencing a standard part of routine clinical care. Next…
September 24th is Familial Hypercholesterolemia (FH) Awareness Day! Let's take a closer look at FH, and how we can help make this day productive for the FH -- and rare…
According to a story from Forbes, a new drug developed by the company Regeneron has the potential to make a real difference for people with the homozygous form of familial…
According to a story from FHM Pakistan, a recent study revealed the familial hypercholesterolemia patients are at a greater risk of stroke, heart attack, and other cardiovascular problems when they…
According to a story from bloomberg.com, the drug development company Arrowhead Pharmaceuticals, Inc. recently announced that its experimental product candidate AR0-ANG3 has earned Orphan Drug designation from the US Food…
In honor of its 30th anniversary, the National Organization for Rare Disorders (NORD) has announced ten new grants as part of its Rare Disease Research Grant Program! NORD is the…
According to a story from brightsurf.com, familial hypercholesterolemia, a genetic condition that causes elevated levels of LDL cholesterol to appear at a young age, often goes undiagnosed. In fact, some…
According to a story from Healio, a recent study suggests that the addition of four more genes to the conventional genetic test used to diagnosed familial hypercholesterolemia could allow more…
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Familial Hypercholesterolemia (FH) is often misdiagnosed as plain old high cholesterol because of overlapping symptoms such as elevated lipid levels. According to a recent article in MedicalView, FH is three…
According to a publication from EurekAlert, high-cholesterol patients, who do not take statins (a type of cholesterol-lowering medication often prescribed by doctors) due to adverse side effects may benefit from…
New Research to be Presented In just a few days the American College of Cardiology will host their 68th Annual Scientific Session (ACC.19). It will be held in New Orleans,…
According to a story from Pharmaphorum, there are a number of new treatments that have been introduced or have seen major strides in development over the last year. More patient…
The 2018 FH Global Summit featured fantastic speakers, timely information, and valuable insight about the past, present and future of the way FH is understood, diagnosed, and managed. The summit…
The Patient Advocate Foundation has recently begun to expand the reach of its popular Co-Pay Relief program. The Co-Pay Relief program is designed to provide financial assistance to qualifying patients.…
If you think you have to be middle-aged or older to check your cholesterol, think again. Laura Livesey is a relatively young blogger (you can check out her blog, Confidence…
This invitation only event will feature global familial hypercholesterolemia experts, industry leaders, caregivers, and patients. The conference will feature speaker and panelists who will address a diverse array of subjects…
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