Updates

August 21, 2019August 21, 2019
Ascendis Publishes Preclinical Findings Supporting Use of TransCon PTH in Human Patients

TransCon PTH normalizes blood levels of calcium and phosphate, and reduces the amount of calcium released in the urine in different animal models, a ... Read more
August 19, 2019August 19, 2019
Nebraska’s Neena Nizar Seeks Cure for Jansen’s, One of World’s Rarest Diseases

Imagine living your whole life with a painful disease so rare that only 25 others worldwide have what you have. And that you’re one ... Read more
August 7, 2019August 7, 2019
15% of Patients Develop Permanent Hypoparathyroidism After Thyroid Surgery, Study Finds

Approximately 15% of patients undergoing surgery to remove the thyroid gland, called a thyroidectomy, develop permanent hypoparathyroidism, an analysis shows. The extent and timing of ... Read more
August 2, 2019August 1, 2019
Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card

Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of women in U.S. prisons, ranks second in the number of ... Read more
August 1, 2019
Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senate

Screening newborns for genetic diseases with treatments that can prevent crippling or deadly progression, especially for rare disorders, has a ways to go in ... Read more

News

Fahr’s, Disease Marked by Calcium Deposits in Brain, Traced to Thyroid Surgery in Case Study
July 31, 2019July 31, 2019
A case report of a person diagnosed with Fahr’s disease related to post-thyroidectomy hypoparathyroidism ...
News

Low PTH Levels Right After Thyroidectomy Linked to Permanent Hypoparathyroidism, Study Suggests
July 24, 2019July 24, 2019
Noting low parathyroid hormone (PTH) levels on the first day after total thyroidectomy can ...
News

European Initiative Targets Diagnosis, Treatment of Rare Diseases
July 19, 2019July 18, 2019
A new international consortium based in Paris, and funded largely by the 28-member European ...
News

Hypoparathyroidism May Indirectly Trigger Cardiac Arrhythmias, Case Report Says
July 17, 2019July 17, 2019
Hypoparathyroidism can trigger serious changes in heartbeat rhythm as a consequence of reduced blood ...
News

Surgeons’ Volume of Work Affects Rate of Hypoparathyroidism, Study Says
July 10, 2019July 10, 2019
The annual rate of surgeries should increase to reduce patients’ risk of developing hypoparathyroidism ...
News

World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients
July 4, 2019July 4, 2019
It wasn’t until Gordana Loleska’s son David was 14 years old that doctors in ...

Subscribe to our mailing list

Get regular updates delivered to your email box.

Thanks! Please check your email for a confirmation email.

Preserving Parathyroid Glands Key to Preventing Hypoparathyroidism After Thyroid Removal, Study Reports
July 3, 2019July 3, 2019
Preserving at least three parathyroid glands is key to avoiding permanent hypoparathyroidism — resulting ...
NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala
June 26, 2019June 25, 2019
A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy ...
Eurordis Unveils Integrated-care Initiative for Rare Disease Patients
June 21, 2019June 20, 2019
‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy
June 19, 2019June 17, 2019
Review Finds Gaps In Knowledge for Managing Post-surgical Hypoparathyroidism
June 12, 2019June 12, 2019
Treatment with Dexamethasone Prior to Thyroid Surgery May Prevent Hypoparathyroidism, Study Shows
June 5, 2019June 5, 2019

Study of Parathyroid Hormone Receptor May Help in Developing Treatments
May 29, 2019May 29, 2019
Researchers have mapped in detail the molecular structure and dynamics of the cell receptor ...
Agency Unveils RaDaR to Help Patient Groups Develop Rare Disease Registries
May 28, 2019May 24, 2019
Ascendis Planning Phase 2 Trial Testing Efficacy, Safety of Investigational TransCon PTH Therapy
May 22, 2019May 22, 2019
Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns
May 17, 2019May 15, 2019

Recombinant PTH Improves Mineral Balance in Chronic Hypoparathyroidism, RACE Trial Shows
May 15, 2019May 15, 2019
Long-term use of recombinant human parathyroid hormone, or rhPTH(1-84), improves mineral balance and normalizes ...
PALS Uplifts the Spirits of Rare-Disease Patients by Offering Free Flights
May 1, 2019
Hypoparathyroidism Interferes with Patients’ Quality of Life, Study Finds
April 17, 2019April 17, 2019

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 ...
News

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 ...
News

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 ...
News

WODC 2019 Organizers Expect 1,200 to Attend Rare Disease Conference in April
February 27, 2019February 25, 2019
The world’s biggest gathering of rare disease researchers, patient groups, pharmaceutical executives, and government ...

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

Subscribe to our mailing list

Pin It on Pinterest