News

May 13, 2020May 13, 2020

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

News, syndicated

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. ... Read more

May 12, 2020May 12, 2020

FPWR Awards More Than $900,000 to Nine Grants in PWS

News

The Foundation for Prader-Willi Research (FPWR) is funding nine projects that intend to improve understanding and help find treatments, including gene therapies, for Prader-Willi syndrome (PWS). In total, FPWR awarded a ... Read more

May 5, 2020May 5, 2020

PWS Supporters Encouraged to Share Stories, Raise Funds for Awareness Month in May

News

This May, the Foundation for Prader-Willi Research (FPWR) is mobilizing people around the world affected by Prader-Willi syndrome (PWS) to raise awareness about the disease and host fundraising activities to ... Read more

April 29, 2020April 29, 2020

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

News, syndicated

While there are few silver linings to the cloud created by COVID-19, the pandemic that has killed tens of thousands, hobbled economies worldwide and drove millions to quarantine in ... Read more

April 28, 2020April 28, 2020

DCCR Approach Reduced Appetite in PWS Patients and Animal Obesity Studies

News

The approach used by diazoxide choline controlled-release (DCCR), Soleno Therapeutics’ investigational oral therapy to reduce appetite in people with Prader-Willi syndrome (PWS), has shown promise in improving insulin sensitivity and ... Read more

April 21, 2020April 22, 2020

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

News, syndicated

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. ... Read more

April 14, 2020April 14, 2020

PWS Children Struggle to Show Emotions, Study Suggests

News

Children with Prader-Willi syndrome (PWS) struggle to express adequate facial and bodily emotions, which is linked to difficulties adapting socially, a study suggests. The study, “Equivocal expression of emotions ... Read more

April 8, 2020April 8, 2020

NORD’s Advice on COVID-19: You’re Stronger Than You Think

News, syndicated

First, the bad news: If you’re one of the 30 million or so Americans with a rare disease, you probably have lower immunity to the novel coronavirus than most ... Read more

April 7, 2020April 7, 2020

Millendo Stops Livoletide Development for PWS After ZEPHYR Trial Misses Goals

News

Millendo Therapeutics‘ treatment candidate livoletide failed to significantly reduce hunger and improve food-related behaviors in people with Prader-Willi syndrome (PWS) who are taking part in the pivotal ZEPHYR Phase ... Read more

March 31, 2020March 31, 2020

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

News

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 as repetitive speech and compulsive ... Read more

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