Updates

March 31, 2020March 31, 2020
Behavioral Problems in PWS Children Assessed Differently by Parents and Teachers, Study Finds

Parents and teachers attribute different severity to behavioral problems of children with Prader–Willi syndrome (PWS), according to a recent study. Although parents see food-related issues, such ... Read more
March 27, 2020March 27, 2020
NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum

The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because ... Read more
March 24, 2020March 24, 2020
PWS-associated Gene Involved in Integration of Vision and Motor Control in the Brain

Altered gene expression underlies impaired function of brain areas regulating vision and motor control, which may be associated with behavioral issues in people with ... Read more
March 23, 2020March 23, 2020
Global Rare Disease Group’s Focus: 1,000 New Therapies by 2027, Despite COVID-19

Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate Lucia Monaco, PhD, of Italy remains confident that the Paris-based ... Read more
March 19, 2020March 19, 2020
Tailored Exercise May Benefit Obese PWS Patients, Case Study Suggests

Obese people with Prader-Willi syndrome (PWS) should have access to exercise training programs different from those of obese people not affected by PWS, a ... Read more

News

Variants in SNORD116 Gene Linked with PWS, Paranoia in Women, Study Finds
March 17, 2020March 17, 2020
Small mutations in SNORD1116, a gene previously linked with typical manifestations of Prader-Willi syndrome ...
News

Higher Insulin Resistance Linked to Mental Illness in PWS, Study Suggests
March 12, 2020March 12, 2020
Children with Prader-Willi syndrome (PWS) may be particularly prone to metabolic alterations, including greater ...
News

Lipidio Completes First Financing Step to Develop PWS Therapy GDD3898
March 10, 2020March 10, 2020
Lipidio Pharmaceuticals has completed the first step of financing to support its development of ...
News

Pediatric Rare Disease Therapies Increase, But Most Repurposed, Study Finds
March 9, 2020March 9, 2020
The number of treatments for children with rare diseases has grown over the past decade, ...
News

Video: BioNews’ Social Media Campaign Highlights #WhatMakesMeRare
March 5, 2020March 6, 2020
In recognition of Rare Disease Day Feb. 29, BioNews Services launched a social media ...
News

Phase 2 Trial Launched to Test Pitolisant for Excessive Sleepiness in PWS
March 5, 2020March 5, 2020
Harmony Biosciences has kicked off a Phase 2 clinical trial to evaluate the safety ...

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Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29
March 3, 2020March 3, 2020
Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review ...
Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar
February 27, 2020February 27, 2020
Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders ...
Patients, Supporters Worldwide Recognizing Rare Disease Day 2020
February 21, 2020March 3, 2020
Dental Care Crucial to Children with PWS Due to Inadequate and Acidic Saliva, Study Says
February 20, 2020February 20, 2020
Psychiatric Symptoms More Common in PWS than in Other Genetic Diseases, Study Finds
February 18, 2020February 18, 2020
Tiny DNA Deletion Including SNORD116 Gene Causes PWS-Like Disease, Case Study Shows
February 13, 2020February 13, 2020

Individuals With PWS Harbor Lower Levels of Irisin Hormone Than Other Obese People, Study Finds
February 11, 2020February 11, 2020
Levels of the hormone irisin are elevated in obese people, but not in those ...
FDA Efforts to Bring Patients into Treatment Decisions Focus of NORD Webinar
February 10, 2020February 10, 2020
With Post-Brexit Move to Amsterdam Complete, EMA Renews Rare Disease Focus
February 7, 2020February 7, 2020
People With PWS Show Impaired Recognition of Voices, Other Sounds, Study Finds
February 6, 2020February 6, 2020

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 ...
PWS Patients More Prone to Have Blood-clotting Problems Than Other Obese People, Study Shows
January 30, 2020January 30, 2020
Parents of Children With PWS Feel More Stress in Their Interactions, Study Suggests
January 28, 2020January 28, 2020

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 ...
News

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 ...
News

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 ...
News

ZEPHYR Trial Testing Livoletide for Hyperphagia Still Recruiting Children Ages 4-7
January 9, 2020January 9, 2020
Livoletide, a potential therapy to curb excessive eating among people with Prader-Willi syndrome (PWS), ...
News

Phase 3 Trial of DCCR Therapy Candidate for PWS Hits Target Enrollment, Soleno Says
January 7, 2020January 7, 2020
Target enrollment of approximately 100 participants has been reached in a Phase 3 clinical ...
News

Specific Genetic Subtypes Linked to Distinct Physical Features of PWS, Study Reports
January 6, 2020January 6, 2020
The specific type of genetic defects in people with Prader-Willi syndrome (PWS) is associated ...
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 ...

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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