Prader-Willi News

June 18, 2021June 18, 2021

Get Ready for NORD’s Patient and Family Forum, Set for June 26-27

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the ... Read more

June 17, 2021June 17, 2021

Growth Hormone May Help Adults Sleep Better Without Raising Apnea Risk

Prader-Willi News

In adults with Prader-Willi syndrome (PWS), use of growth hormone (GH) treatment may improve the quality of sleep with no significant negative effects on breathing, such as obstructive sleep apnea, ... Read more

June 15, 2021June 15, 2021

FPWR Webinar Highlights New PWS Research, Funding for Spring 2021

COVID-19 News, Prader-Willi News

The goal of the Foundation for Prader-Willi Research (FPWR) is to fund and support studies that will help “to eliminate the challenges” faced by people with the rare genetic disease, ... Read more

June 10, 2021June 10, 2021

Rare 2030 Action Campaign Pushing for European Plan for Rare Diseases

Prader-Willi News

Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European action plan for rare diseases to ensure that none of the 30 million people in ... Read more

June 8, 2021June 8, 2021

Genetic Cause of PWS Can Affect Age at Diagnosis, Therapy Start

Prader-Willi News

The genetic profile of children with Prader-Willi syndrome (PWS) correlates with their age at diagnosis and at the start of growth hormone treatment, as well as with pre-treatment levels of insulin-like ... Read more

June 4, 2021June 4, 2021

Advocates Can Try for Grants Ahead of Rare Disease Week on Capitol Hill

Prader-Willi News

Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in ... Read more

June 3, 2021June 3, 2021

DCCR ‘Worked Across the Board’ in PWS Trial, But Results Are Less Clear

COVID-19 News, Prader-Willi News

Editor’s Note: This is the second of two articles looking at DCCR, Soleno Therapeutics’ investigational treatment, and the DESTINY-PWS trial. The first can be found here. Likely next steps for diazoxide choline ... Read more

June 1, 2021June 1, 2021

DCCR Shows ‘Life-changing’ Potential in Troubled Trial, Doctor Says in Interview

COVID-19 News, Prader-Willi News

Diazoxide choline controlled release (DCCR) tablets are an investigational therapy for Prader-Willi syndrome (PWS) that, according to data from a Phase 3 clinical trial and linked extension study, may be ... Read more

May 25, 2021May 25, 2021

COVID-19 Lockdown Led to Weight Loss in PWS Adults, French Study Says

COVID-19 News, Prader-Willi News

Lockdown during the COVID‐19 pandemic led to weight reduction among half of adults with Prader-Willy syndrome (PWS) in a French study, data show. Weight loss typically was seen in patients ... Read more

May 20, 2021May 20, 2021

Irish Children With PWS Found to Have Vitamin, Nutrient Deficiencies

Prader-Willi News

A study of Irish children with Prader-Willi syndrome (PWS) found that the majority had a normal body mass index (BMI) while also showing evidence of vitamin and nutrient deficiencies. The ... Read more

May 18, 2021May 18, 2021

First PWS Genome Sequencing Project Now Enrolling Participants

Prader-Willi News

The Foundation for Prader-Willi Research (FPWR) is launching the first Prader-Willi syndrome (PWS) Genome Project, it announced. This project aims to unveil how variations in patients’ DNA influence the range and severity ... Read more

May 13, 2021May 13, 2021

Patient-derived ‘Mini-brains’ May Help in Understanding PWS

Prader-Willi News

New brain-like organoids, or “mini-brains,” that are specific to key regions and derived from patients could serve as models for studies of the underlying neurological and molecular mechanisms of Prader-Willi ... Read more

May 11, 2021May 12, 2021

Saniona Video Series Highlights Impact of PWS and Hypothalamic Obesity

Prader-Willi News

A new video series from Saniona is highlighting the impact, on patients and caregivers, of Prader-Willi syndrome (PWS) and an associated condition called hypothalamic obesity. Called “Saniona’s Community Voices,” the ... Read more

May 6, 2021May 6, 2021

In Interviews, PWS Caregivers Find DCCR Helps to Ease Troubling Behaviors

COVID-19 News, Prader-Willi News

In interviews, most caregivers of people with Prader-Willi syndrome (PWS) reported an easing in patients’ behavioral symptoms after 13 or more weeks of treatment with diazoxide choline controlled release (DCCR) tablets ... Read more

May 4, 2021May 4, 2021

From Bingo to Fitness and Mixology, Activities Mark Awareness Month

Prader-Willi News

From joining a mixology course to participating in fundraiser bingo, supporters globally are set to mark Prader-Willi Syndrome Awareness Month, observed each May. Awareness and education are crucial to heightening ... Read more