Updates

November 19, 2019November 19, 2019
FDA Grants Fast Track Designation to PWS Potential Therapy LV-101

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 ... Read more
November 14, 2019
Rare Disease Film Festival Highlights Patient and Researcher Unity

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 ... Read more
November 14, 2019
Phase 2b/3 Trial of Livoletide Completes Enrollment of PWS Patients Ages 8 to 65

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 ... Read more
November 12, 2019November 12, 2019
Obesity and Bone Fractures in Children with PWS Tied to High Blood Levels of Protein, Study Says

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), ... Read more
November 7, 2019November 7, 2019
Daily Probiotic Reduces Abdominal Fat and Insulin Resistance in Children with PWS, Study Finds

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 ... Read more

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 ...
News

Caregivers of Young PWS Children Experience Poor Quality of Life, Need Additional Support, Study Says
October 22, 2019October 22, 2019
Caregivers of young children with Prader-Willi syndrome (PWS) report low quality of life, highlighting ...
News

Eutropin Produces Similar Benefits as Genotropin in Infants with PWS, Study Says
October 17, 2019October 17, 2019
Recombinant growth hormones Eutropin and Genotropin were found to produce similar improvements in growth, body ...

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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 ...
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

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 ...
Higher Dose of Tesomet Effective in PWS Adolescents, Saniona Reports
September 24, 2019September 24, 2019
Deficit in Social Cognitive Abilities Among PWS Children Linked to Genetic Subtype, Study Says
September 5, 2019September 5, 2019
Birth Weight and Length May Help Identify Newborns with Prader-Willi Syndrome
September 3, 2019September 3, 2019

‘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 ...
Both Surgery, Cast Correction Effective in Treating Early-onset Scoliosis in PWS Children, Study Reports
August 29, 2019August 29, 2019
At NY Genome Center, Legal Expert Presents Ethical Dilemmas in Gene Editing
August 28, 2019August 28, 2019

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 ...
News

Factors Such as Older Age, Obesity, and Heart Disease Raise Risk of Blood Clots in PWS Patients, U.S. Survey Says
August 13, 2019August 13, 2019
Certain risk factors — such as older age, obesity, metabolic syndrome, cardiovascular disease, and ...
News

Inhibiting Epigenetic Enzyme May Help Reactivate Key PWS Genes, Study Suggests
August 8, 2019August 8, 2019
Inhibiting an enzyme involved in Prader Willi syndrome (PWS) can help rescue the activity ...
News

Millendo Therapeutics Announces Phase 2b/3 Trial Assessing Promising PWS Therapy, Livoletide
August 6, 2019August 6, 2019
A potential new treatment for Prader-Willi syndrome (PWS) will be tested in the large, ...
News

Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card
August 2, 2019August 2, 2019
Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of ...
News

Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senate
August 1, 2019
Screening newborns for genetic diseases with treatments that can prevent crippling or deadly progression, ...

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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