News

November 17, 2020November 17, 2020

Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

News, syndicated

Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about ... Read more

November 12, 2020November 12, 2020

Parents of Teenagers With PWS Show High Levels of Stress, Study Finds

News

Stress levels of parents of children with Prader-Willi syndrome (PWS) increase as the children age, and are especially high during their teenage years, according to a study. The study, ... Read more

November 5, 2020November 6, 2020

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

News, syndicated

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit ... Read more

November 3, 2020November 3, 2020

24-hour Family Support Services Offered to PWS Community in US

News

Through the end of the year, the Prader-Willi Syndrome Association USA (PWSA USA) is offering 24-hour family support services to everyone in the Prader-Willi syndrome (PWS) community. The association’s ... Read more

October 29, 2020October 29, 2020

Study Shows Benefits of Early Growth Hormone Therapy in PWS Children

News

Starting growth hormone therapy before the first birthday has significant benefits over beginning treatment at an older age in children with Prader-Willi syndrome (PWS), an analysis found. Children treated early ... Read more

October 27, 2020October 28, 2020

UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner

News, syndicated

A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will be featured on the front cover of an upcoming calendar ... Read more

October 22, 2020October 22, 2020

Probiotic BPL1 Eases Abdominal Fat, Aids Mental Health of PWS Children, Study Finds

News

In older children with Prader-Willi syndrome (PWS), the probiotic supplement BPL1 reduced abdominal fat, social withdrawal and depression, while also easing insulin resistance, a study reported. These findings are consistent ... Read more

October 20, 2020October 20, 2020

Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

News, syndicated

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a ... Read more

October 15, 2020October 15, 2020

Sleep Apnea Common Among Infants, Children With PWS, Chinese Study Finds

News

Sleep apnea — a potentially serious disorder in which breathing repeatedly stops and starts during sleep — affects more than 80% of children with Prader-Willi syndrome (PWS), according to ... Read more

October 13, 2020October 13, 2020

FDA Provides Feedback to Saniona on Development of Tesomet for PWS

News

The U.S. Food and Drug Administration (FDA) has provided some recommendations to Saniona regarding the development of Tesomet to treat Prader-Willi syndrome (PWS). In particular, the agency is advising the ... Read more