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
Updates
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Adrenal Surgery Causes Persistent Decrease in Kidney Function in Cushing’s Patients, Study Suggests
People with Cushing’s syndrome who undergo surgery to remove one or both adrenal glands experience a persistent decrease in kidney function after one month that ... Read more -
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 -
Adrenal Gland Surgeries May Be Safer if Incisions Made to Back
Making incisions through the back of the body, rather than the front, can lessen bleeding and shorten operation time during surgery to remove the ... Read more -
Study Recommends ARMC5 Gene Analysis for Cushing’s Patients With Bilateral Adrenal Masses
More than half of the people with Cushing’s syndrome due to masses in both adrenal glands have disease-causing mutations the ARMC5 gene, a small ... Read more
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Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds
The number of treatments for children with rare diseases has grown over the past decade, ... -
Researchers Establish Cutoff Value for Dexamethasone in Cushing’s Tests
While the diagnosis of Cushing’s syndrome is often based on a low-dose dexamethasone suppression ... -
FDA Approves New Oral Treatment Isturisa for Cushing’s Disease
Isturisa (osilodrostat) is now approved in the U.S. for adults with Cushing’s disease for whom ... -
Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare
In recognition of Rare Disease Day Feb. 29, BioNews Services launched a social media ... -
Recordati Rare Diseases Will Market Signifor, Signifor LAR in U.S.
Recordati‘s U.S. marketing rights for Cushing’s disease medications Signifor (pasireotide) and Signifor LAR will be ...
Cardiovascular Health, Quality of Life Improves After Cushing’s Syndrome Surgery, Study Shows
News
Heart problems in Cushing’s syndrome patients may be partially reversed after tumor removal surgery, new research shows. For most patients in the study, the surgery also improved quality of life, mental and physical health, anxiety, and depression. However, 1 ... Read more