Prader-Willi News

June 21, 2022June 21, 2022

Diet, Medication Can Help in Weight Loss for Obese Patients; Adherence Needed

Prader-Willi News

A special low-calorie diet and appetite suppressing medications — either alone or together — led to substantial weight loss for obese people with Prader-Willi syndrome (PWS), a small study showed. However, ... Read more

June 14, 2022June 14, 2022

NORD’s ‘Living Rare, Living Stronger’ Patient, Family Forum Set for June 26

COVID-19 News, Prader-Willi News

The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in ... Read more

June 7, 2022June 8, 2022

Body Weight, Genetics May Predict Success in Weight Reduction Program

Prader-Willi News

Adults with Prader-Willi syndrome (PWS) who weigh more, have a higher body mass index (BMI), and have a larger waist and hip circumference are most likely to respond successfully to ... Read more

May 24, 2022May 24, 2022

Some Brain Regions Are Abnormally Small in People With PWS: Study

Prader-Willi News

Certain regions of the brain are unusually small in people with Prader-Willi syndrome (PWS), a study reveals. “The present study provides objective evidence of volumetric alterations in the subcortical, limbic, ... Read more

May 10, 2022May 10, 2022

DCCR Trials’ New Data Show Sustained Easing of Hunger, Disruptive Behaviors

COVID-19 News, Prader-Willi News

A year of treatment with DCCR (diazoxide choline controlled release) tablets, Soleno Therapeutics’ investigational therapy for people with Prader-Willi syndrome (PWS), safely led to sustained reductions in excessive hunger and disease-related behaviors, according to ... Read more

May 3, 2022May 3, 2022

15 Ways – and More – to Celebrate PWS Awareness Month This May

Prader-Willi News

This year’s Prader-Willi syndrome (PWS) Awareness Month has launched, and will be celebrated with several educational and fundraising initiatives worldwide throughout May. Advocates will use the month-long event to raise ... Read more

May 2, 2022May 2, 2022

Organizations Rally to Help Ukrainian Rare Disease Patients

Prader-Willi News

A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ... Read more

April 26, 2022April 26, 2022

High Scoliosis Prevalence in PWS, With 80% of Patients in Study Affected

Prader-Willi News

Scoliosis — an abnormal sideways curvature of the spine — has a high prevalence among people with Prader-Willi syndrome (PWS), and becomes increasingly more common with older age, a study ... Read more

April 20, 2022April 20, 2022

Europe Awaits Proposed New Framework for Sharing Health Data

Prader-Willi News

The European Commission is expected to propose a new governing framework for health data next month, called the European Health Data Space (EHDS), with the aim of connecting national health ... Read more

April 19, 2022April 19, 2022

Early Use of Growth Hormone Treatment Tied to Better Cognition in Small Study

Prader-Willi News

Starting treatment with growth hormone early in life — before age 2 — was associated with better cognitive and behavioral outcomes for children with Prader-Willi syndrome (PWS) in a recent ... Read more

April 12, 2022April 12, 2022

Telehealth Added to Latest Digital-friendly NORD State Report Card

COVID-19 News, Prader-Willi News

The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues ... Read more

April 5, 2022April 5, 2022

Tesomet Maker, Saniona, Pauses Phase 2b Clinical Trial for People With PWS

Prader-Willi News

Saniona will pause the Phase 2b clinical trials testing Tesomet for people with Prader-Willi syndrome (PWS) and hypothalamic obesity (HO). The decision “is not related to the safety or efficacy of ... Read more

March 29, 2022March 29, 2022

Common Autism Symptoms in PWS Linked to Impaired Social Functioning

Prader-Willi News

Impaired social responsiveness, an indicator of autism spectrum disorder (ASD), is prevalent among adults with Prader-Willi syndrome (PWS), and is associated with worse social functioning, according to a recent study. ... Read more

March 25, 2022March 25, 2022

Increased Education Crucial to Improving Rare Disease Care, Survey Finds

Prader-Willi News

Healthcare providers involved in diagnosing and treating rare diseases believe that increased physician education and collaboration with specialized facilities will have the greatest positive impact on treating these conditions over ... Read more

March 24, 2022March 24, 2022

PWS Patients Not Found to Have More Severe COVID-19 Symptoms in Survey

COVID-19 News, Prader-Willi News

People with Prader-Willi syndrome (PWS) who had COVID-19 experienced either no symptoms or only mild illness due to the infection, an international survey study found. These findings were unexpected, as ... Read more