It’s been nearly a year since the EveryLife Foundation for Rare Diseases released its expansive report finding the total economic burden of rare disorders in the U.S. to be nearly $1 trillion.
News
Transplanting parathyroid gland cells into the forearms of a hypoparathyroidism rat model restored hormone and calcium levels, a study reported. These findings support further developing a parathyroid cell transplant for people with hypoparathyroidism caused by the removal of the parathyroid glands, the scientists said.
Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends, and advocates from around the world to raise awareness and improve equity for the more than 7,000 known rare diseases that affect more than 300 million people. In 2022, the…
Six months of treatment with Forteo (teriparatide) — a lab-made parathyroid hormone fragment approved for osteoporosis — safely led to calcium and phosphate control in a 4-month old girl with severe hypoparathyroidism, a case report found. These findings highlight the potential of this off-label medication to treat infants with…
Vitamin D levels can accurately predict reductions in parathyroid hormone (PTH) following thyroidectomy in patients with papillary thyroid cancer (PTC), a study reports. Its researchers recommend vitamin D supplements before surgery to minimize the drop in PTH levels in patients with PTC who have vitamin D deficiency. The study, “…
Starting immunosuppressive treatment early in the disease course normalized some signs of autoimmunity, halted the development of additional autoimmune diseases, and reversed total body hair loss in a girl with autoimmune polyglandular syndrome type 1 (APS1), a case study shows. While immunosuppressive therapies have been generally reserved for life-threatening…
Impaired activity of the adrenal glands, a condition called Addison’s disease, may be the only typical manifestation of autoimmune polyglandular syndrome type 1 (APS1) to have occurred decades after diagnosis, a case report suggests. APS1, a rare inherited autoimmune disorder, is typically characterized by at least two of three manifestations:…
A 13-year-old boy with autosomal dominant hypocalcemia (ADH) — a genetic form of hypoparathyroidism characterized by low calcium — who was unresponsive to conventional therapies was successfully treated with recombinant parathyroid hormone (rhPTH), according to a case report. rhPTH is a synthetic parathyroid hormone that can help regulate calcium…
Patients with hypoparathyroidism experience reduced health-related quality of life, as compared to those without the disease, regardless of blood calcium levels, according to a new study. The authors of the study suggest that some of these health-related quality of life issues may be amended with the use of PTH…
Children with thyroid cancer or disease who undergo surgery to remove that gland can commonly have their parathyroid glands accidentally removed during the thyroidectomy, a U.S. study reports. While such surgeries are rare in children, this finding calls for meticulous attention from surgeons performing a thyroidectomy — especially if examining…
Recent Posts
- New 5-tier system aims to better guide hypoparathyroidism treatment
- Reflections on gratitude and hope for the new year
- Rethinking my holiday plans with hypopara limitations in mind
- Hypopara’s unpredictability causes surprises during treatment
- Online tool predicts who’s at risk for chronic complication after surgery