Get regular updates to your inbox.
A routine procedure called PGA — for parathyroid gland autotransplantation — often done following surgery to remove the thyroid gland, is associated with a higher risk of immediate hypoparathyroidism, a study shows. However, PGA did not raise the risk of permanent hypoparathyroidism, or that lasting more than six months.
Football and science seem to be disparate fields of play at first glance, but the nonprofit Uplifting Athletes is finding common ground by leveraging the popularity of college gridiron games to fund research for rare diseases. Its nearly two dozen chapters — representing college football teams across the nation…
Amolyt Pharma has raised $80 million in financing that will support the clinical development of AZP-3601, its experimental therapy for hypoparathyroidism. Hypoparathyroidism is caused by abnormally low levels of the parathyroid hormone (PTH), leading to low vitamin D and calcium levels, as well as high phosphorus levels…
A newly launched non-profit institute is seeking to advance research, and the development of new therapies, for people with rare diseases — a patient community with some of the largest therapeutic needs, but one that is often left behind. Named the Institute for Life Changing Medicines, the project was…
In a woman whose severe hypoparathyroidism did not respond to standard treatment, constant infusion of a lab-engineered form of the parathyroid hormone (PTH) eliminated symptoms and improved her quality of life, a case study from Portugal reports. This medication, called Forsteo (teriparatide) and marketed in the U.S. as…
Participation in clinical trials exposes rare disease patients to financial, physical, and emotional pressures, according to the results of a patient focus group series. “Rare disease trial participants are running an endurance race they are highly motivated to complete, but these incremental burdens negatively impact their ability or willingness to…
The National Organization for Rare Disorders, known as NORD, was named an official charity partner of the 2021 TCS New York City Marathon, which will be held Nov. 7 both in-person and online. “Supporting charitable causes and organizations are a long-standing tradition of the TCS New York City…
The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that offers resources and support for caregivers of children with rare diseases. “The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses” was designed…
Four new mutations of the AIRE gene were identified for the first time in Chinese patients with autoimmune polyendocrine syndrome type 1 (APS1), a case series reports. The report also presents a thorough evaluation of the clinical and genetic characteristics of Chinese APS1 patients and some rarely observed symptoms.
Low levels of the parathyroid hormone (PTH) soon after a thyroidectomy is linked to a greater risk of chronic hypoparathyroidism, or that lasting more than six months, a study reported. Its findings suggest that blood tests to measure PTH levels may allow doctors to discharge sooner patients who are at low…
Get regular updates to your inbox.