News

People with hypoparathyroidism, particularly if they developed the condition after surgery, experience worse patient-reported mental health than healthy individuals, a study reports. The study, “The effects of patient and disease-related factors on the quality of life in patients with hypoparathyroidism,” was published in the journal…

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease in the United States. People with rare diseases know that the impacts of such conditions extend beyond just medical…

ProLynx has been awarded a small business innovation research grant from the National Institutes of Health (NIH) to develop its long-acting parathyroid hormone (PTH) therapy — known as PTH(1-34) — for people with hypoparathyroidism. Hypoparathyroidism is an uncommon condition characterized by low levels of PTH,…

People with hypoparathyroidism whose disease cannot be sustainably controlled with conventional treatment and parathyroid hormone (PTH) infusions may benefit from a continuous PTH infusion using an insulin pump, a case series suggests. The approach was found to be safe and to control the disease for 5.5 years or…

People who undergo surgery to remove the entire thyroid gland have a much higher incidence of chronic hypoparathyrodism than previously reported, with younger patients and those with so-called toxic thyroid disease at particular risk, a study in Denmark found. The study, “High incidence of…

The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will support activities that align with the foundation’s Rare Belonging focus, a set of funding priorities aimed at improving the…

Alizé Pharma 3 is rebranding as Amolyt Pharma and plans to start clinical testing of a potential hypoparathyroidism treatment known as AZP-3601 later this year. “Our new name, Amolyt Pharma, is derived from ammolite, a rare gemstone originating from living organisms,” Thierry Abribat, PhD, the company’s founder and…

The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on reducing racial disparities in the rare disease community. Getting a timely and accurate diagnosis for a disease that few people — sometimes even physicians — have heard of is challenging on its own merit.

People with hypoparathyroidism living in the U.S. still struggle to receive proper medical care, particularly during emergency room visits, according to findings of a survey conducted by the HypoPARAthyroidism Association (HPA). The results of the HPA’s “Voices of Hypopara” survey were released in support of World Hypoparathyroidism…

While the ongoing COVID-19 pandemic won’t have much of an impact on cash available for new biotech startups, it has begun to cause delays in the development of gene therapies to treat a variety of rare diseases. That’s the consensus of industry experts who spoke in a May 26 webinar…