Updates

April 1, 2020April 1, 2020
Long‐term Natpara Treatment Improves Bone Remodeling, Study Shows

Long-term treatment with Takeda’s parathyroid hormone therapy Natpara normalizes bone remodeling and bone density in people with hypoparathyrodism, according to a four-year study. This ... Read more
March 30, 2020March 30, 2020
NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum

The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because ... Read more
March 26, 2020March 31, 2020
What Are the Factors That Can Cause Hypoparathyroidism?

Hypoparathyroidism is a rare condition in which the body produces abnormally low levels of an important hormone called parathyroid hormone, or PTH. This hormone controls ... Read more
March 25, 2020March 25, 2020
Novel TBX1 Gene Mutation Caused Family’s Hypoparathyroidism, Deafness, Case Study Says

A novel mutation in the TBX1 gene caused hypoparathyroidism and deafness in a man and his three children, a case study reports. The study, “A ... Read more
March 20, 2020March 20, 2020
Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19

Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate Lucia Monaco, PhD, of Italy remains confident that the Paris-based ... Read more

News

Milder, Earlier Symptoms of Hypoparathyroidism Found in Patients with DiGeorge Syndrome
March 18, 2020March 18, 2020
Patients with DiGeorge syndrome tend to experience hypoparathyroidism symptoms earlier — and ones that are milder ...
News

Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds
March 12, 2020March 12, 2020
The number of treatments for children with rare diseases has grown over the past decade, ...
News

Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare
March 5, 2020March 5, 2020
In recognition of Rare Disease Day Feb. 29, BioNews Services launched a social media ...
News

Hypoparathyroidism Risk Can Be Lowered by Careful Surgical Gland Dissection, Study Says
March 4, 2020March 4, 2020
Careful identification and dissection of the parathyroid glands during thyroid surgery can reduce the ...
News

Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29
March 2, 2020March 2, 2020
Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review ...
News

Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar
February 26, 2020February 26, 2020
Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders ...

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Patients, Supporters Worldwide Recognizing Rare Disease Day 2020
February 21, 2020March 3, 2020
An abundance of events are afoot around the world to mark Rare Disease Day ...
Study Identifies Risk Factors for Hypoparathyroidism in Children After Thyroid Removal
February 19, 2020February 19, 2020
Removal of lymph nodes in the neck and invasion of neighboring tissues with thyroid ...
FDA Efforts to Bring Patients into Treatment Decisions Focus of NORD Webinar
February 12, 2020February 12, 2020
With Post-Brexit Move to Amsterdam Complete, EMA Renews Rare Disease Focus
February 7, 2020February 7, 2020
New Patient-derived Questionnaire May Better Assess Quality of Life for Those With Hypoparathyroidism, Study Reports
February 5, 2020February 5, 2020
High Rate of Calcium-alkali Syndrome Linked to Post-surgery Hypoparathyroidism, Study Suggests
January 29, 2020January 29, 2020

People With Type 2 Diabetes Should Get Calcium Levels Tested for Hypoparathyroidism, Case Report Suggests
January 22, 2020January 22, 2020
People with type 2 diabetes mellitus and muscle pain should have the calcium levels ...
Calcium Supplements Every Other Day May Help Manage Chronic Hypoparathyroidism, Study Suggests
January 15, 2020January 15, 2020
Hypoparathyroidism With Brain Calcifications May Cause Movement Problems, Case Report Shows
January 8, 2020January 8, 2020
Low PTH Levels May Lead to Greater Risk of Fractures in Hypoparathyroidism, Study Suggests
December 18, 2019December 18, 2019

Rare Case of Calcium Supplements Risking Kidney Injury in Women with Hypoparathyroidism Reported
December 11, 2019December 11, 2019
A 61-year-old woman’s case calls attention to the potential development of calcium-alkali syndrome (CAS) ...
HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases
December 6, 2019
Clinicians Should Consider Hypoparathyroidism When Symptoms Suggest Brain Calcification, Case Study Says
December 4, 2019December 4, 2019

News

Symptoms of Uncontrolled Hypoparathyroidism Reduce Quality of Life for Patients, Caregivers, Survey Finds
November 27, 2019November 27, 2019
Most people with uncontrolled, chronic hypoparathyroidism experience moderate-to-severe symptoms — even while on treatment ...
News

Phase 2 Trial of TransCon PTH to Speed Enrollment of Patients Affected by U.S. Recall of Natpara
November 20, 2019November 20, 2019
A Phase 2 trial testing the experimental therapy TransCon PTH in adults with hypoparathyroidism ...
News

Rare Disease Film Festival Highlights Patient and Researcher Unity
November 13, 2019
Rare disease-themed videos glowed on a large screen before an audience of people in ...
News

High BMI Predicts Poor Response to Vitamin D in Patients With Chronic Hypoparathyroidism, Study Reports
November 13, 2019November 13, 2019
High body mass index (BMI) may predict poor response to standard vitamin D treatment in ...
News

PTH Levels 4 Hours After Thyroidectomy Is Best Predictor of Hypoparathyroidism, Study Suggests
November 6, 2019November 6, 2019
Four hours after surgery is the best time to measure intact parathyroid hormone (iPTH) ...
News

Phase 2 Study of Treatment for Hypoparathyroidism, TransCon PTH, Starts to Enroll Adults
October 30, 2019October 30, 2019
A Phase 2 trial evaluating the efficacy and safety of TransCon PTH — designed to restore ...
News

New 17-Item Survey Specific to Hypoparathyroidism May Help in Treating Patients, Study Says
October 23, 2019October 23, 2019
An easy-to-use scale accessing the severity of 17 symptoms linked to hypoparathyroidism from a patient’s ...
News

Fatigue in Post-surgery Hypoparathyroidism Linked to Problems with Control of Heart Rate, Study Finds
October 16, 2019October 16, 2019
Greater fatigue in postoperative patients with chronic hypoparathyroidism (hypoPT) is associated with cardiovascular autonomic ...
News

Doses of Oral hPTH(1-34) May Safely be Adjusted to Suit Needs of Patients with Hypoparathyroidism, Phase 2 Study Shows
October 9, 2019October 9, 2019
The pharmacological properties of hPTH(1-34) allow the oral medication to be administered at different ...

May 30, 2018May 30, 2018

Asymptomatic Hypoparathyroidism in Thalassemia Patients Is Not Uncommon, Researchers Find

News

Screening for asymptomatic hypoparathyroidism should be considered in transfusion-dependent thalassemia patients to allow for early disease detection and intervention, researchers suggest. Their study, “Under-recognized Hypoparathyroidism in Thalassemia,” was published in the Journal of Clinical Research in Pediatric Endocrinology. The occurrence ... Read more

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