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December 5, 2019December 5, 2019

HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases

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Despite skyrocketing healthcare costs, President Trump is committed to protecting the 30 million or so Americans with rare diseases and ensuring timely, affordable access to lifesaving treatments, the nation’s ... Read more

December 3, 2019December 3, 2019

Difficulty Recognizing Facial Expressions May Contribute to Poor Social Skills for PWS Adults, Study Suggests

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Adults with Prader-Willi syndrome (PWS) have difficulty recognizing facial expressions, which may contribute to their poor social skills, a study reveals. The researchers found that people with PWS also ... Read more

November 26, 2019November 26, 2019

Shorter Telomeres in Young Adults with PWS May Indicate Premature Aging, Study Reports

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Telomeres — a marker of cell division and lifespan — were found to be shorter in young adults with Prader-Willi syndrome (PWS) than in healthy controls, which could be ... Read more

November 21, 2019November 21, 2019

Early Diagnosis and Treatment of PWS May Reduce Risk of Obesity, Study Suggests

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Early diagnosis and treatment of Prader-Willi syndrome may delay obesity and minimize the risk for associated complications, a study suggests. The study, “Early Diagnosis in Prader–Willi Syndrome Reduces Obesity ... Read more

November 19, 2019November 19, 2019

FDA Grants Fast Track Designation to PWS Potential Therapy LV-101

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The U.S. Food and Drug Administration (FDA) has granted fast track designation to LV-101 (intranasal carbetocin), a treatment candidate for people with Prader-Willi syndrome (PWS). This designation is granted ... Read more

November 14, 2019

Rare Disease Film Festival Highlights Patient and Researcher Unity

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Rare disease-themed videos glowed on a large screen before an audience of people in wheelchairs, with crutches, and bearing oxygen tanks this Nov. 9 and 10 in San Francisco. ... Read more

November 14, 2019

Phase 2b/3 Trial of Livoletide Completes Enrollment of PWS Patients Ages 8 to 65

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A Phase 2b/3 clinical trial of livoletide, a treatment candidate for excessive eating in people with Prader-Willi syndrome (PWS), has completed recruitment of participants who are 8 to 65 ... Read more

November 12, 2019November 12, 2019

Obesity and Bone Fractures in Children with PWS Tied to High Blood Levels of Protein, Study Says

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Children with Prader-Willi syndrome (PWS) have high levels of a protein called LIGHT/TNFSF14, which may contribute to obesity and low bone mineral density (BMD), a study suggests. The research, ... Read more

November 7, 2019November 7, 2019

Daily Probiotic Reduces Abdominal Fat and Insulin Resistance in Children with PWS, Study Finds

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Daily consumption of a common probiotic significantly lowered the percentage of abdominal fat, improved insulin resistance, and reduced social withdrawal in patients with Prader-Willi syndrome, a study has found. ... Read more

November 5, 2019November 5, 2019

Long-term Growth Hormone Treatment Not Linked with Increased Severity of Scoliosis in Children with PWS, Study Finds

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Treatment with growth hormone for eight years led to a lower spine curvature in children with Prader-Willi syndrome (PWS) who developed scoliosis, a preliminary Dutch study reports. The research, “Effects ... Read more

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