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A 52-year-old woman with spine and hip pain related to hypoparathyroidism was wrongly diagnosed with spondyloarthritis (SpA) — a type of arthritis that affects the spine — leading to years of unnecessary anti-inflammatory use, a case study reported.  Its…

European authorities must step up efforts to screen babies for a multitude of genetic disorders, a panel of experts suggested during a May 14-15 online medical conference. The session was part of the 10th European Conference on Rare Diseases & Orphan Products (ECRD2020) — which was to have occurred…

Dara Riva always had a rule that her 10-year-old son could play video games only once a week. But then the COVID-19 pandemic struck, and her perspective changed. Riva’s son, Maximilian, has cystic fibrosis (CF), making him particularly susceptible to COVID-19 and the complications that can arise from it.

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…