Updates

May 22, 2019May 22, 2019
Ascendis Planning Phase 2 Trial Testing Efficacy, Safety of Investigational TransCon PTH Therapy

Ascendis Pharma is planning the design of its upcoming Phase 2 clinical trial intended to assess the efficacy and safety of its proprietary, investigational ... Read more
May 17, 2019May 15, 2019
Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns

With 250 rare diseases newly identified every year, scientists can barely keep up — even as the healthcare system fails millions of Americans whose ... Read more
May 15, 2019May 15, 2019
Recombinant PTH Improves Mineral Balance in Chronic Hypoparathyroidism, RACE Trial Shows

Long-term use of recombinant human parathyroid hormone, or rhPTH(1-84), improves mineral balance and normalizes the levels of calcium in the urine of people with ... Read more
May 1, 2019
PALS Uplifts the Spirits of Rare-Disease Patients by Offering Free Flights

Cumbersome security procedures, rising airfares, and shrinking legroom have made commercial air travel difficult enough these days — even for healthy passengers. Imagine how ... Read more
April 17, 2019April 17, 2019
Hypoparathyroidism Interferes with Patients’ Quality of Life, Study Finds

Despite treatment, all patients with hypoparathyroidism experience physical and psychological symptoms that negatively impact their quality of life, a study finds. The findings were presented ... Read more

News

Risk of Complications Increases with Patient’s Age for Thyroidectomy, But Not for Hypoparathyroidism
April 10, 2019April 10, 2019
Contrary to other thyroid-related complications, the incidence of hypoparathyroidism in patients who undergo a thyroidectomy — a common ...
News

Chronic Hypoparathyroidism Linked to Long-term Renal, Cardiovascular Problems, Studies Show
April 3, 2019April 3, 2019
Chronic hypoparathyroidism is linked to long-term renal and cardiovascular complications, and can have severe ...
News

Report Describes How Skin Cancer Treatment Resulted in Hypoparathyroidism
March 27, 2019March 27, 2019
Treatment with an immunotherapy regimen against skin cancer resulted in a rare case of immune-mediated ...
News

Calcium Supplements Not Always Needed to Treat Hypoparathyroidism, Study Suggests
March 20, 2019March 20, 2019
A new study suggests that calcium supplements might not be necessary for all patients ...
News

Brexit Could Have Real Effects for UK Rare Disease Patients, Experts Warn
March 15, 2019March 14, 2019
Madeline Collin, a 24-year-old activist with Gaucher disease, worries that patients like her will ...
News

Ascendis Pharma Seeks FDA Approval for TransCon PTH Phase 2 Trial
March 13, 2019March 13, 2019
Ascendis Pharma is planning to initiate clinical studies to evaluate the potential of its ...

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Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist
March 13, 2019March 11, 2019
With each new advance in medicine comes ethical dilemmas, from fertility treatments and newborn ...
NIH Rare Disease Day Highlights Joint Networks Advancing Array of Research
March 6, 2019March 5, 2019
Rare diseases affect about 30 million Americans — roughly the same number as those ...
WODC 2019 Organizers Expect 1,200 to Attend Rare Disease Conference in April
February 27, 2019February 25, 2019
Vienna to Host RARE2019 Meeting on Rare Diseases
February 22, 2019February 20, 2019
Trial Assesses Benefits of New Parathyroid Auto-Transplantation Site for Hypoparathyroidism
February 13, 2019February 13, 2019
Patients, Family and Friends to Take Part in Variety of Rare Disease Day Events Worldwide
February 11, 2019

Hypoparathyroidism Symptom Diaries Are Reliable, Valid, Study Says
February 6, 2019February 6, 2019
Analysis of hypoparathyroidism symptom diaries is an appropriate measure of disease symptoms and how they ...
Postoperative Parathyroid Hormone Levels Predict Hypoparathyroidism Risk
January 30, 2019January 30, 2019
Post-surgical Hypoparathyroidism Protects Against Effects of Thyroid Suppressors on Bone, Study Finds
January 2, 2019January 8, 2019
Rising Healthcare Costs Strain EU Budgets Even as New Therapies Flourish
December 21, 2018December 20, 2018

Many Hypoparathyroidism Patients Would Consider Parathyroid Transplant, Survey Shows
December 19, 2018December 19, 2018
Patients with hypoparathyroidism who experience severe symptoms and a low quality of life, despite receiving ...
Alizé Pharma 3 Aims to Become Leader in Treatment of Rare Endocrine and Metabolic Disease
December 12, 2018December 12, 2018
Pregnant Women Should Monitor Serum Calcium Levels, Researchers Say
December 5, 2018December 5, 2018

News

Entera Bio’s Parathyroid Hormone Therapy Shows Potential in Early Phase 2 Results
November 28, 2018April 2, 2019
Entera Bio’s investigational parathyroid hormone compound called Oral PTH (1-34) appears to be able ...
News

Chronic Hypoparathyroidism Linked to Higher Risk of Serious Illnesses, Study Finds
November 8, 2018November 8, 2018
People with chronic hypoparathyroidism are at higher risk of developing other illnesses — including heart ...
News

#NORDSummit – Major Issues on Table for Rare Disease Patients in US as Midterm Elections Approach
October 31, 2018October 29, 2018
With the U.S. midterm elections now less than two weeks away, patient advocacy groups ...
News

Risk of Complications After Thyroidectomy Not Increased in Older Patients, Study Reports
October 24, 2018October 24, 2018
Advanced age does not increase the risk of postoperative complications in patients older than ...
News

CHOP Physician Wins ASBMR Award for Bone and Mineral Metabolism Research
October 17, 2018October 17, 2018
A renowned expert on metabolic bone disorders, including hypoparathyroidism, Michael A. Levine’s groundbreaking professional ...
News

Advocacy Groups, Doctors Question Rising Prices of Rare Disease Treatments
October 10, 2018
Half a year has gone by since disgraced pharma executive Martin Shkreli was sentenced ...
News

Temporary Hypoparathyroidism Common After Surgery in Thyroiditis Patients, Study Finds
October 3, 2018October 3, 2018
Post-surgical hypoparathyroidism is a common temporary complication in patients who undergo thyroid removal surgery, ...
News

Injection of Carbon Nanoparticles During Thyroid Cancer Surgery Helps Prevent Hypoparathyroidism
September 26, 2018September 26, 2018
The injection of carbon nanoparticles during surgery to remove thyroid cancer and central lymph ...
News

#NORDSummit – More Than 700 Expected to Attend Oct. 15-16 Rare Disease Summit in Washington
September 21, 2018September 21, 2018
More than 700 medical experts, pharmaceutical executives, patient advocates, and others are expected to ...

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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