Updates

September 18, 2019September 18, 2019
Liver Transplant Could Rescue Hypoparathyroidism Caused by Wilson Disease, Case Report Suggests

A case report in China suggests that a liver transplant may rescue hypoparathyroidism caused by Wilson’s disease, although the collected evidence is not yet sufficient ... Read more
September 12, 2019September 12, 2019
Takeda Issues U.S. Recall of Natpara Due to Risks from Packaging

Takeda has issued a U.S. recall of its prescription parathyroid hormone Natpara, due to the potential risk of small rubber fragments detaching from the ... Read more
September 4, 2019September 4, 2019
Post-surgery Complication Risk is Lower for Patients Whose Surgeons Perform More Thyroidectomies Annually, Study Says

The probability a patient has of developing hypoparathyroidism and other complications after undergoing thyroid surgery tends to decrease if the procedure is performed by ... Read more
September 2, 2019August 30, 2019
‘Disorder’ Film Festival Offers Look at Siblings Touched by Rare Diseases

Rare diseases deeply affect not only the children who experience them, but also their healthy brothers and sisters, as their parents can attest. ... Read more
August 28, 2019August 28, 2019
At NY Genome Center, Legal Expert Presents Ethical Dilemmas in Gene Editing

Developing gene therapies for rare diseases is one thing. Creating gene-edited “designer babies” is quite another. German legal expert Timo Minssen outlined the potentially ... Read more

News

Ascendis Publishes Preclinical Findings Supporting Use of TransCon PTH in Human Patients
August 21, 2019August 21, 2019
TransCon PTH normalizes blood levels of calcium and phosphate, and reduces the amount of ...
News

Nebraska’s Neena Nizar Seeks Cure for Jansen’s, One of World’s Rarest Diseases
August 19, 2019August 19, 2019
Imagine living your whole life with a painful disease so rare that only 25 ...
News

15% of Patients Develop Permanent Hypoparathyroidism After Thyroid Surgery, Study Finds
August 7, 2019August 7, 2019
Approximately 15% of patients undergoing surgery to remove the thyroid gland, called a thyroidectomy, develop ...
News

Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card
August 2, 2019August 1, 2019
Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of ...
News

Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senate
August 1, 2019
Screening newborns for genetic diseases with treatments that can prevent crippling or deadly progression, ...
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 ...

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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 ...
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 ...
Hypoparathyroidism May Indirectly Trigger Cardiac Arrhythmias, Case Report Says
July 17, 2019July 17, 2019
Surgeons’ Volume of Work Affects Rate of Hypoparathyroidism, Study Says
July 10, 2019July 10, 2019
World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients
July 4, 2019July 4, 2019
Preserving Parathyroid Glands Key to Preventing Hypoparathyroidism After Thyroid Removal, Study Reports
July 3, 2019July 3, 2019

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
Although treatment with dexamethasone before thyroid surgery does not significantly prevent hypoparathyroidism and excess ...
Study of Parathyroid Hormone Receptor May Help in Developing Treatments
May 29, 2019May 29, 2019
Agency Unveils RaDaR to Help Patient Groups Develop Rare Disease Registries
May 28, 2019May 24, 2019

News

Ascendis Planning Phase 2 Trial Testing Efficacy, Safety of Investigational TransCon PTH Therapy
May 22, 2019May 22, 2019
Ascendis Pharma is planning the design of its upcoming Phase 2 clinical trial intended ...
News

Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns
May 17, 2019May 15, 2019
With 250 rare diseases newly identified every year, scientists can barely keep up — ...
News

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 ...
News

PALS Uplifts the Spirits of Rare-Disease Patients by Offering Free Flights
May 1, 2019
Cumbersome security procedures, rising airfares, and shrinking legroom have made commercial air travel difficult ...
News

Hypoparathyroidism Interferes with Patients’ Quality of Life, Study Finds
April 17, 2019April 17, 2019
Despite treatment, all patients with hypoparathyroidism experience physical and psychological symptoms that negatively impact their ...
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 ...

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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