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…
A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a series of surveys found. The surveys were conducted by the National Organization for Rare Disorders (NORD) and involved more than 800…
People with thyroid cancer who develop hypoparathyroidism after surgery have reduced quality of life and worse symptoms than those without hypoparathyroidism, a study reports. The study, “Quality of life in patients with hypoparathyroidism after treatment for thyroid cancer” was published in The Journal of Clinical Endocrinology &…
Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, including amyotrophic lateral sclerosis (ALS). The organization’s panel of judges has pared the number of contest submissions…
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