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Eurordis, a Paris-based coalition of national rare disease associations across Europe, hosted its first all-virtual conference, bringing some 1,500 delegates from 57 countries together online during the COVID-19 pandemic. The 10th European Conference on Rare Diseases & Orphan Products (ECRD2020) — which was set for May 14–15 in…

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…

While there are few silver linings to the cloud created by COVID-19, the pandemic that has killed tens of thousands, hobbled economies worldwide and drove millions to quarantine in their homes, one may be a new appreciation of telemedicine. “If something good could come out of this crisis, it’s that…

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…

People needing to take vitamin D and calcium supplements due to very low levels soon after thyroid cancer surgery are likely to experience a decline in their quality of life (QOL) over at least the following year, a study suggests. As such, assessing calcium and vitamin D levels, as well…

Undetectable parathyroid hormone (PTH) levels in the blood one day after total thyroidectomy and removal of lymph nodes in the neck is a significant risk factor to develop permanent hypoparathyroidism, researchers suggest. The study, “Risk factors of permanent hypoparathyroidism after total thyroidectomy and central neck dissection for…