Updates

December 10, 2019December 10, 2019
Resistance Training in Young Adults with PWS Possible and Beneficial, Study Suggests

Despite low muscle tone, young adults with Prader-Willi syndrome can do exercises involving resistance training and likely will benefit from greater muscle strength, a ... Read more
December 5, 2019December 5, 2019
HHS Secretary Alex Azar Touts White House Efforts to Cure Rare Diseases

Despite skyrocketing healthcare costs, President Trump is committed to protecting the 30 million or so Americans with rare diseases and ensuring timely, affordable access ... Read more
December 3, 2019December 3, 2019
Difficulty Recognizing Facial Expressions May Contribute to Poor Social Skills for PWS Adults, Study Suggests

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 ... Read more
November 26, 2019November 26, 2019
Shorter Telomeres in Young Adults with PWS May Indicate Premature Aging, Study Reports

Telomeres — a marker of cell division and lifespan — were found to be shorter in young adults with Prader-Willi syndrome (PWS) than in ... Read more
November 21, 2019November 21, 2019
Early Diagnosis and Treatment of PWS May Reduce Risk of Obesity, Study Suggests

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 ... Read more

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 ...

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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 ...
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 ...
PWS Patients Struggle with Certain Aspects of Social Cognition, Study Finds
October 24, 2019October 24, 2019
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
Birth of Children with PWS Not Related to Seasonal Factors, Study Finds
October 15, 2019October 15, 2019

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 ...
For Second Time, DSMB Recommends Continuation of Soleno’s DESTINY PWS Trial
October 8, 2019October 8, 2019
Specific National Code for PWS Expected to Facilitate Research, Improve Patient Care
October 3, 2019October 3, 2019
Proof-of-concept Study Shows DCCR Treatment Addresses Unmet Needs in PWS
October 1, 2019October 1, 2019

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, ...
Orlando to Host PWSA National Convention Oct. 23-26
September 26, 2019September 26, 2019
Higher Dose of Tesomet Effective in PWS Adolescents, Saniona Reports
September 24, 2019September 24, 2019

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 ...
News

Birth Weight and Length May Help Identify Newborns with Prader-Willi Syndrome
September 3, 2019September 3, 2019
Newborns with Prader-Willi syndrome often have a lower birth weight and can be shorter ...
News

‘Disorder’ Film Festival Offers Look at Siblings Touched by Rare Diseases
August 30, 2019August 30, 2019
Rare diseases deeply affect not only the children who experience them, but also their ...
News

Both Surgery, Cast Correction Effective in Treating Early-onset Scoliosis in PWS Children, Study Reports
August 29, 2019August 29, 2019
Both growth friendly surgery (GFS) and serial cast correction (SCC) were found to help ...
News

At NY Genome Center, Legal Expert Presents Ethical Dilemmas in Gene Editing
August 28, 2019August 28, 2019
Developing gene therapies for rare diseases is one thing. Creating gene-edited “designer babies” is ...
News

Saniona Sets Goals for its Clinical Program of Tesomet for PWS
August 27, 2019August 27, 2019
Saniona will continue to develop Tesomet (tesofensine/metoprolol) as a potential therapy for Prader-Willi syndrome (PWS), with ...
News

FPWR Research Symposium and Family Conference Set for Oct. 3-5 in New Orleans
August 22, 2019August 22, 2019
The upcoming Research Symposium and Family Conference, hosted by the Foundation for Prader-Willi Research (FPWR), will ...
News

Patients Treated With Growth Hormone Score Higher on Vocabulary IQ Tests, Study Shows
August 20, 2019August 20, 2019
People with Prader–Willi syndrome (PWS) who received growth hormone therapy had significantly higher vocabulary ...
News

Nebraska’s Neena Nizar Seeks Cure for Jansen’s, One of World’s Rarest Diseases
August 19, 2019August 19, 2019
Imagine living your whole life with a painful disease so rare that only 25 ...

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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