People with chronic hypoparathyroidism not controlled by conventional therapy may experience a substantial burden of illness and impaired quality of life, mostly due to persistent symptoms and multiple co-existing conditions. That finding comes from a survey-based study of attending physicians, “…
The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to a survey conducted by Eurordis-Rare Diseases Europe. “People living with rare diseases in Europe have found themselves caught as collateral…
The specific surgical procedures used when patients undergo thyroid surgery — known as thyroidectomy — dictate the risks they have of developing hypoparathyroidism and other complications, a study found. Because this type of surgery is associated with a high risk of complications and requires specialized care, it should…
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 with hypoparathyroidism who wish to undergo weight-loss surgery should consider possible difficulties in maintaining calcium levels within a normal range before undergoing the procedure. The case report with that finding, “The challenges of post-bariatric surgery hypocalcaemia in pre-existing hypoparathyroidism,” was published in the journal…
Central lymph node dissection (CLND), or the removal of lymph nodes in the neck, increases the risk of permanent hypoparathyroidism in people with papillary thyroid cancer (PTC) who are treated by total thyroidectomy — surgery to remove the thyroid gland —…
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…
The European Commission (EC) has granted orphan drug designation to Ascendis Pharma’s experimental hormone replacement therapy TransCon PTH, currently in development for the treatment of hypoparathyroidism. Medicines…
A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…
Note: This story was updated on Nov. 12, 2020, to clarify key scientific concepts. A Phase 1 clinical trial of AZP-3601, an experimental therapy designed to induce a prolonged increase in blood calcium levels in people with hypoparathyroidism…
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