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In recognition of Rare Disease Day Feb. 29, Bionews Services launched a social media campaign last month asking patients to describe what makes them rare. Running Feb. 7–29, the #WhatMakesMeRare campaign was aimed at uplifting people with rare diseases by encouraging them to share their stories and perspectives. The…

Careful identification and dissection of the parathyroid glands during thyroid surgery can reduce the risk of hypoparathyroidism after the procedure, a study suggests. The study, “Risk Factors of Incidental Parathyroidecomy in Thyroid Surgery,” was published in the journal Cureus. Hypoparathyroidism is…

Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and aims to supports work by researchers and clinicians into a better understanding of and treatments for rare diseases, as well…

Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for those  looking to begin the complex process in its Feb. 20 webinar.  William Whitman…

An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

Removal of lymph nodes in the neck and invasion of neighboring tissues with thyroid cancer cells are risk factors for developing hypoparathyroidism following total thyroidectomy in children, a study reports. The study, “Risks of Hypoparathyroidism After Total Thyroidectomy in Children: A 21-Year Experience in a High-Volume Cancer Center,”…

The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500 people and had a budget of $5.7 billion in 2019. Yet even with its enormous resources, the FDA these days relies more and more on patients to…

The gleaming new Dutch headquarters of the European Medicines Agency (EMA), fronting Domenico Scarlattilaan in Amsterdam’s suburban Zuidas business district, finally opened for business last month — just over two years after the European Union decided to relocate the EMA to the Netherlands in the wake of Brexit.

A new questionnaire devised from complaints of patients with hypoparathyroidism may better assess quality of life and the characteristic symptoms of the disorder, according to a study. The study, “The HPQ—Development and First Administration of a Questionnaire for Hypoparathyroid Patients,” was published in the journal JBMR Plus. Among…

People with hypoparathyroidism after surgical removal of the thyroid may develop calcium-alkali syndrome (CAS) — particularly if they are given high doses of vitamin D as a part of post-surgical care, a new study suggests. These findings highlight a need for routine surveillance of calcium levels following thyroid…