News

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…

Although the COVID-19 pandemic is profoundly affecting daily life around the world, Takeda does not expect disruptions in the global supply of any of its products in the near future, the company said in a statement. Hypoparathyrodism patients in the U.S. receiving the parathyroid…

People with hypoparathyroidism may be at risk of having calcium crystals form in their tendons — a condition called calcific tendonitis — which can cause joint pain and inflammation, a new case report suggests. The report, “Acute calcific epicondylitis associated with primary hypoparathyroidism: a paradox effect…

People with hypoparathyrodism have significantly higher blood pressure and stiffness of blood arteries — two known risk factors for cardiovascular disease — than their healthy peers, a Turkish study shows. The research also highlighted that older age and abnormally high levels of phosphorus were associated with increased arterial…

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…

Ascendis Pharma’s investigational therapy TransCon PTH safely restored calcium and phosphate balance and eliminated the need for current standard care in adults with hypoparathyroidism, top-line data from a Phase 2 clinical trial show. “With TransCon PTH, our goal has always been to improve the lives of patients…

First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most people. Now, the good news: You already know how to face loneliness and adversity — qualities that make you far stronger…