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…
An estimated 1.3 million people across the United States, and 30 million people globally, live with familial hypercholesterolemia (FH). This rare inherited form of high low-density lipoprotein (LDL) cholesterol remains…
In a story from BioPharma Dive, a number of high-profile clinical trials are under way that could see conclusive results by the end of 2023. While some of these are…
In the average person, you would expect to see normal to near-optimal low-density lipoprotein (LDL) cholesterol levels sitting at 129 mg/DL or lower; levels under 100 are seen as healthier.…
For many people, a rare disease diagnosis can feel like life is over. For Angel, growing up with homozygous familial hypercholesterolemia (HoFH), a rare genetic condition characterized by extremely high…
Familial hypercholesterolemia (FH) is an inherited form of very high cholesterol. Early treatment is needed for those living with FH to lower cholesterol levels and reduce the risk of heart…
This story was originally published by the Family Heart Foundation, a Patient Worthy partner organization. When Jessica’s father died of a heart attack at the young age of 54, she…
September 24, 2022 will be recognized as Familial Hypercholesterolemia (FH) Awareness Day, a time to spread awareness about this under-recognized condition among the general public and in the medical field.…
Her brother, her sister, and her father - all people that Salima Mohip lost before they turned 43. Each of them passed away from heart attacks, a consequence of their…
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…
According to a story from MedPage Today, a recent study has determined the familial hypercholesterolemia (FH) can often go undetected on genetic tests that rely on arrays. As an example,…
The FDA has just announced their approval of Evkeeza as a therapy for those living with homozygous familial hypercholesterolemia. The therapy is owned by Regeneron Pharmaceuticals. It was evaluated with…
According to an announcement from the FH Foundation, data from the FH Foundation’s CASCADE FH Registry, published in The Journal of Pediatrics, has determined that children living with familial hypercholesterolemia regularly…
Between August 29 and September 1, researchers joined in at ESC 2020 - The Digital Experience, developed and organized by the European Society of Cardiology (ESC). During this online conference,…
Researchers in Canada have just released positive results from their heterozygous familial hypercholesterolemia (HeFH) clinical trial. This investigation was examining the effect of Repatha on teenagers with the condition. The trial…
A press release issued recently by Regeneron Pharmaceuticals heralded the acceptance of a Biologics License Application by the FDA for Priority Review of its investigational drug, evinacumab. The Priority…
This week, Regeneron Pharmaceuticals announced that their Biologics License Application (BLA) for evanicumab, a treatment for homozygous familial hypercholesterolemia (HoFH), was granted Priority Review status by the FDA. The…
Ana Pina from the Centro de Estudos de Doencas Cronicas at NOVA Medical School in Portugal, and her colleagues recently published an innovative study regarding the diagnosis of familial hypercholesterolemia (FH).…
Patients with congenital diseases often experience a range of uncomfortable symptoms. On one side of the world, a family with erythromelalgia, a painful condition which can cause redness and swelling…
According to a story from The Scarborough News, brother Connor and sister Kiera Pickering, aged eleven and twelve years respectively, will be some of the first patients to be treated…
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.…
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