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Dara Riva always had a rule that her 10-year-old son could play video games only once a week. But then the COVID-19 pandemic struck, and her perspective changed. Riva’s son, Maximilian, has cystic fibrosis (CF), making him particularly susceptible to COVID-19 and the complications that can arise from it.

Eurordis, a Paris-based coalition of national rare disease associations across Europe, hosted its first all-virtual conference, bringing some 1,500 delegates from 57 countries together online during the COVID-19 pandemic. The 10th European Conference on Rare Diseases & Orphan Products (ECRD2020) — which was set for May 14–15 in…

An online survey of ways to best promote a healthier lifestyle among people with Prader-Willi syndrome (PWS) is being conducted by the University of Cambridge with support from the International Prader-Willi Syndrome Organisation…

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. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…

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 total of $912,251 in the first round of this year’s research awards, according to a press release.

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 advance disease research. This year’s PWS Awareness Month came to be thanks to the efforts of Republican…

FFF Enterprises and Bionews announced today that both rare and orphan disease advocates are joining forces to provide patients with resources to help them connect as a community and continue to manage their health during this time when many are finding themselves alone. Recognized as the nation’s leading supplier of…

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 their homes, one may be a new appreciation of telemedicine. “If something good could come out of this crisis, it’s that…

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 reducing body fat in several animal models of obesity linked to excessive eating. The findings were…

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in the rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible…