Updates

January 16, 2020January 16, 2020
Electrical Nerve Stimulation Eases Temper Outbursts in Adults with PWS, Study Suggests

Non-invasive vagus nerve stimulation (VNS) — which sends signals to a key nerve that runs through the neck — may help reduce temper outbursts ... Read more
January 14, 2020January 14, 2020
New Deal Will Fund Development of Tesomet for PWS, Saniona Says

A new funding deal will aid Saniona‘s development of Tesomet (tesofensine/metoprolol), a potential therapy to help control appetite and weight in people with Prader-Willi ... Read more
January 9, 2020January 9, 2020
ZEPHYR Trial Testing Livoletide for Hyperphagia Still Recruiting Children Ages 4-7

Livoletide, a potential therapy to curb excessive eating among people with Prader-Willi syndrome (PWS), is being tested in a global Phase 2b/3 clinical trial ... Read more
January 7, 2020January 7, 2020
Phase 3 Trial of DCCR Therapy Candidate for PWS Hits Target Enrollment, Soleno Says

Target enrollment of approximately 100 participants has been reached in a Phase 3 clinical trial evaluating the investigational oral therapy diazoxide choline controlled-release (DCCR) ... Read more
January 6, 2020January 6, 2020
Specific Genetic Subtypes Linked to Distinct Physical Features of PWS, Study Reports

The specific type of genetic defects in people with Prader-Willi syndrome (PWS) is associated with distinct physical characteristics such as height, weight, and hair ... Read more

News

Medix Seeks Approval of Tesofensine to Treat Obesity in Mexico
January 2, 2020January 2, 2020
Medix has submitted a new drug application to the Mexican food and drug administration ...
News

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 ...
News

Study of Hibernating Animals, PWS Patients Reveals Over 300 Potential Genetic Regulators of Obesity
December 17, 2019December 17, 2019
A genetic analysis of hibernating animals and people with Prader-Willi syndrome (PWS) has revealed ...
News

Resistance Training in Young Adults with PWS Possible and Beneficial, Study Suggests
December 10, 2019December 10, 2019
Despite low muscle tone, young adults with Prader-Willi syndrome can do exercises involving resistance ...
News

HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases
December 5, 2019December 5, 2019
Despite skyrocketing healthcare costs, President Trump is committed to protecting the 30 million or ...
News

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 ...

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Shorter Telomeres in Young Adults with PWS May Indicate Premature Aging, Study Reports
November 26, 2019November 26, 2019
Telomeres — a marker of cell division and lifespan — were found to be ...
Early Diagnosis and Treatment of PWS May Reduce Risk of Obesity, Study Suggests
November 21, 2019November 21, 2019
Early diagnosis and treatment of Prader-Willi syndrome may delay obesity and minimize the risk ...
FDA Grants Fast Track Designation to PWS Potential Therapy LV-101
November 19, 2019November 19, 2019
Rare Disease Film Festival Highlights Patient and Researcher Unity
November 14, 2019
Phase 2b/3 Trial of Livoletide Completes Enrollment of PWS Patients Ages 8 to 65
November 14, 2019
Obesity and Bone Fractures in Children with PWS Tied to High Blood Levels of Protein, Study Says
November 12, 2019November 12, 2019

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 ...
Long-term Growth Hormone Treatment Not Linked with Increased Severity of Scoliosis in Children with PWS, Study Finds
November 5, 2019November 5, 2019
Home-based Exercise Improves Physical Activity in Women with PWS, Study Determines
October 31, 2019October 31, 2019
Gut Microbiome May Protect PWS Patients from Insulin Resistance, Study Suggests
October 29, 2019October 29, 2019

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 ...
Caregivers of Young PWS Children Experience Poor Quality of Life, Need Additional Support, Study Says
October 22, 2019October 22, 2019
Eutropin Produces Similar Benefits as Genotropin in Infants with PWS, Study Says
October 17, 2019October 17, 2019

News

Birth of Children with PWS Not Related to Seasonal Factors, Study Finds
October 15, 2019October 15, 2019
The birth of children in the U.S. with Prader-Willi syndrome (PWS) — a rare ...
News

Research Supported by PWS Foundation to Examine Cause of Behavioral Problems, Possible Treatment
October 10, 2019October 10, 2019
A grant winner’s research may help to advance a possible treatment of behavioral problems ...
News

For Second Time, DSMB Recommends Continuation of Soleno’s DESTINY PWS Trial
October 8, 2019October 8, 2019
The Data Safety Monitoring Board (DSMB) has recommended, for the second time, the continuation ...
News

Specific National Code for PWS Expected to Facilitate Research, Improve Patient Care
October 3, 2019October 3, 2019
Prader-Willi syndrome (PWS) has been given its own unique code by the National Center ...
News

Proof-of-concept Study Shows DCCR Treatment Addresses Unmet Needs in PWS
October 1, 2019October 1, 2019
Results of a Phase 2 clinical trial testing diazoxide chloride controlled release (DCCR) in ...
News

NORD 2019 Rare Disease Summit Set for Oct. 21-22 in Washington, DC
September 27, 2019September 27, 2019
Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, ...
News

Orlando to Host PWSA National Convention Oct. 23-26
September 26, 2019September 26, 2019
More than 800 people are expected to converge on Orlando, Florida, in late October ...
News

Higher Dose of Tesomet Effective in PWS Adolescents, Saniona Reports
September 24, 2019September 24, 2019
Saniona announced that adolescents with Prader-Willi syndrome (PWS) showed improvements in weight, body mass index ...
News

Deficit in Social Cognitive Abilities Among PWS Children Linked to Genetic Subtype, Study Says
September 5, 2019September 5, 2019
The deficit in social cognitive abilities among young children with Prader-Willi syndrome (PWS) starts ...

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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