News

People who are genetically predisposed toward obesity or having high levels of so-called “bad” cholesterol — low-density lipoprotein (LDL) cholesterol — are at increased risk of contracting COVID-19, a study reported. The study, “Causal Inference for Genetic Obesity, Cardiometabolic Profile and COVID-19 Susceptibility: A Mendelian Randomization…

Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about how their respective organizations came to be, as well as the benefits of creating patient registries and how they can help…

People whose genetics predispose them towards obesity are more likely to develop chronic kidney disease (CKD), a new study indicates. Notably, the findings suggest that obesity can cause CKD primarily by increasing the risk of high blood pressure and type 2 diabetes. The study, “Conventional and…

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit organizations and research programs to help people with rare diseases. “The RareLaunch program is central to NORD’s mission and history — community…

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series of surveys found. The surveys were conducted by the National Organization for Rare Disorders (NORD) and involved more than 800…