The world’s biggest gathering of rare disease researchers, patient groups, pharmaceutical executives, and government officials is planned for April 10–12 in a Washington, D.C., suburb. Some 1,200 people have already registered to attend the World Orphan Drug Congress (WODC) USA 2019, set to take place at the Gaylord National Harbor…
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About 100 scientists, researchers, pharmaceutical executives, and others will converge on Austria’s capital city early next month for the 2nd International Congress on Advanced Treatments in Rare Diseases. The March 4-5 meeting, to take place at the Hilton Am Stadtpark Vienna, features 27 speakers on a variety of disorders…
A team of Chinese researchers is conducting a clinical trial to test a new parathyroid auto-transplantation site for patients with hypoparathyroidism. The study protocol was published in an article, “Parathyroid autotransplantation at a novel site for better evaluation of the grafted gland function: study protocol for a prospective, randomized…
Scores of events are afoot worldwide to mark Feb. 28, Rare Disease Day 2019. The activities aim to raise awareness about rare diseases and the millions of people — estimates run as high as 350 million — they are thought to impact. Across countries, patients, caregivers and advocates will paint faces, wear…
Analysis of hypoparathyroidism symptom diaries is an appropriate measure of disease symptoms and how they affect patients’ quality of life, a study shows. The research article, “Psychometric evaluation of the hypoparathyroidism symptom diary,” was published in Dove Press. Hypoparathyroidism symptom burden is…
A meticulous surgical technique based on parathyroid autotransplantation, and not vitamin D supplementation, is more efficient to preserve parathyroid function and avoid postoperative hypoparathyroidism following thyroid surgery, a study shows. The study, “Can preoperative vitamin D deficiency predict postoperative hypoparathyroidism following thyroid surgery?…
Postmenopausal women with post-surgical hypoparathyroidism treated with thyroid suppressors are less likely to experience bone loss compared to postmenopausal women with a normal parathyroid function, a study has found. The study, “Trabecular bone score and bone mineral density in patients with postsurgical hypoparathyroidism after total thyroidectomy for differentiated thyroid carcinoma,”…
Cash-strapped governments across the 28-member European Union are struggling to control runaway healthcare expenditures — at exactly the same time as the promise of new but expensive therapies to treat rare diseases has never been greater. That’s the paradox faced by pharmaceutical companies as well as patient advocacy groups in…
Patients with hypoparathyroidism who experience severe symptoms and a low quality of life, despite receiving regular medication, would consider a parathyroid transplant as an appealing treatment option, a study has found. The study, “Patients’ views about parathyroid transplantation for post-thyroidectomy hypoparathyroidism,…
Alizé Pharma 3, a biopharmaceutical company focused on developing therapies for rare diseases, including hypoparathyroidism, is making efforts to become a leading company focusing on rare endocrine and metabolic diseases. The company will establish operations in Europe and North America to achieve faster global regulatory approvals for leading candidate…
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