Updates

February 18, 2020February 18, 2020
Psychiatric Symptoms More Common in PWS than in Other Genetic Diseases, Study Finds

Children and young adults with Prader-Willi syndrome (PWS) have a higher prevalence of psychiatric symptoms than their peers with other genetic disorders associated with ... Read more
February 13, 2020February 13, 2020
Tiny DNA Deletion Including SNORD116 Gene Causes PWS-Like Disease, Case Study Shows

Loss of a region on chromosome 15 that involves the SNORD116 gene leads to the development of Prader-Willi syndrome (PWS)-like disease, suggesting that missing ... Read more
February 11, 2020February 11, 2020
Individuals With PWS Harbor Lower Levels of Irisin Hormone Than Other Obese People, Study Finds

Levels of the hormone irisin are elevated in obese people, but not in those with Prader-Willi syndrome (PWS), likely reflecting underlying differences in fat ... Read more
February 10, 2020February 10, 2020
FDA Efforts to Bring Patients into Treatment Decisions Focus of NORD Webinar

The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500 people and had a budget of $5.7 billion in 2019. ... Read more
February 7, 2020February 7, 2020
With Post-Brexit Move to Amsterdam Complete, EMA Renews Rare Disease Focus

The gleaming new Dutch headquarters of the European Medicines Agency (EMA), fronting Domenico Scarlattilaan in Amsterdam’s suburban Zuidas business district, finally opened for business ... Read more

News

People With PWS Show Impaired Recognition of Voices, Other Sounds, Study Finds
February 6, 2020February 6, 2020
Individuals with Prader-Willi syndrome (PWS) have difficulty recognizing voices and other sounds, which may ...
News

PWS Should Be Considered in Differential Diagnosis of Infants in China with Limited Womb Mobility, Low Birth Weight, Study Says
February 4, 2020February 4, 2020
Prader-Willi syndrome (PWS) should be considered in the differential diagnosis of infants with limited ...
News

PWS Patients More Prone to Have Blood-clotting Problems Than Other Obese People, Study Shows
January 30, 2020January 30, 2020
Although uncommon, blood-clotting problems are more likely to occur in people with Prader-Willi syndrome ...
News

Parents of Children With PWS Feel More Stress in Their Interactions, Study Suggests
January 28, 2020January 28, 2020
Parents of preschoolers with Prader-Willi Syndrome (PWS) tend to be relatively more stressed and ...
News

Adenotonsillectomy May Help Lessen Obstructive Sleep Apnea in PWS Children, Study Suggests
January 23, 2020January 23, 2020
Adenotonsillectomy — a surgery to remove both the adenoids and tonsils — may help ...
News

Hip, Knee Replacement Surgery Rare Among PWS Patients, Study Finds
January 21, 2020January 21, 2020
People with Prader-Willi syndrome (PWS) rarely undergo hip or knee replacement surgery, but those ...

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Electrical Nerve Stimulation Eases Temper Outbursts in Adults with PWS, Study Suggests
January 16, 2020January 16, 2020
Non-invasive vagus nerve stimulation (VNS) — which sends signals to a key nerve that ...
New Deal Will Fund Development of Tesomet for PWS, Saniona Says
January 14, 2020January 14, 2020
A new funding deal will aid Saniona‘s development of Tesomet (tesofensine/metoprolol), a potential therapy ...
ZEPHYR Trial Testing Livoletide for Hyperphagia Still Recruiting Children Ages 4-7
January 9, 2020January 9, 2020
Phase 3 Trial of DCCR Therapy Candidate for PWS Hits Target Enrollment, Soleno Says
January 7, 2020January 7, 2020
Specific Genetic Subtypes Linked to Distinct Physical Features of PWS, Study Reports
January 6, 2020January 6, 2020
Medix Seeks Approval of Tesofensine to Treat Obesity in Mexico
January 2, 2020January 2, 2020

Poorer Adaptive Ability Tied to Anxiety and Hyperactivity in PWS, Study Says
December 19, 2019December 19, 2019
Difficulties that people with Prader-Willi syndrome (PWS) have in adapting to their surroundings appear to ...
Study of Hibernating Animals, PWS Patients Reveals Over 300 Potential Genetic Regulators of Obesity
December 17, 2019December 17, 2019
Resistance Training in Young Adults with PWS Possible and Beneficial, Study Suggests
December 10, 2019December 10, 2019
HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases
December 5, 2019December 5, 2019

Difficulty Recognizing Facial Expressions May Contribute to Poor Social Skills for PWS Adults, Study Suggests
December 3, 2019December 3, 2019
Adults with Prader-Willi syndrome (PWS) have difficulty recognizing facial expressions, which may contribute to ...
Shorter Telomeres in Young Adults with PWS May Indicate Premature Aging, Study Reports
November 26, 2019November 26, 2019
Early Diagnosis and Treatment of PWS May Reduce Risk of Obesity, Study Suggests
November 21, 2019November 21, 2019

News

FDA Grants Fast Track Designation to PWS Potential Therapy LV-101
November 19, 2019November 19, 2019
The U.S. Food and Drug Administration (FDA) has granted fast track designation to LV-101 ...
News

Rare Disease Film Festival Highlights Patient and Researcher Unity
November 14, 2019
Rare disease-themed videos glowed on a large screen before an audience of people in ...
News

Phase 2b/3 Trial of Livoletide Completes Enrollment of PWS Patients Ages 8 to 65
November 14, 2019
A Phase 2b/3 clinical trial of livoletide, a treatment candidate for excessive eating in ...
News

Obesity and Bone Fractures in Children with PWS Tied to High Blood Levels of Protein, Study Says
November 12, 2019November 12, 2019
Children with Prader-Willi syndrome (PWS) have high levels of a protein called LIGHT/TNFSF14, which ...
News

Daily Probiotic Reduces Abdominal Fat and Insulin Resistance in Children with PWS, Study Finds
November 7, 2019November 7, 2019
Daily consumption of a common probiotic significantly lowered the percentage of abdominal fat, improved ...
News

Long-term Growth Hormone Treatment Not Linked with Increased Severity of Scoliosis in Children with PWS, Study Finds
November 5, 2019November 5, 2019
Treatment with growth hormone for eight years led to a lower spine curvature in children ...
News

Home-based Exercise Improves Physical Activity in Women with PWS, Study Determines
October 31, 2019October 31, 2019
Supervised exercise sessions at home are an effective strategy to improve the levels of ...
News

Gut Microbiome May Protect PWS Patients from Insulin Resistance, Study Suggests
October 29, 2019October 29, 2019
The gut microbiome — the microbial community in the gut — of people with ...
News

PWS Patients Struggle with Certain Aspects of Social Cognition, Study Finds
October 24, 2019October 24, 2019
People with Prader-Willi syndrome (PWS) have difficulty recognizing negative emotions throughout their lives, often ...

October 25, 2018October 26, 2018

Lean Muscle Mass Factors Strongly in Bone Health, Study Using Prader Willi Patients as Model Finds

News

Lean muscle mass is a strong predictor of bone mineral density, or bone health, research that used Prader-Willi syndrome (PWS) as a genetic model to determine which factors influence such density reports. In fact, lean mass was found to ... Read more

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