News

NORD’s Caregiver Respite Program Continues Through Pandemic

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…

Art Contest Salutes Creativity of Rare Disease Communities

Butterflies, ballerinas, and abstract flowers are featured among the winning artwork of this year’s Rare Artist contest, hosted by the EveryLife Foundation for Rare Diseases to heighten awareness about rare disease communities and salute the creativity of its members. Awardees will be able to display their art and…

Online Format Outlined for PWSA’s 2021 Convention

Due to the COVID-19 pandemic, the Prader-Willi Syndrome Association (PWSA) in the U.S. has announced its upcoming 36th National Convention,  “Hope’s on the Horizon,” will be moving to an all-new virtual format.  The PWSA will provide patients and families within the…

INV-101 Granted FDA Rare Pediatric Disease Designation

Inversago Pharma‘s INV-101 has been granted rare pediatric disease (RPD) designation by the U.S. Food and Drug Administration for the treatment of Prader-Willi syndrome (PWS). This designation is given to potential medications targeting serious diseases that primarily affect less than 200,000 Americans ages 18 or younger. If the…

Remote Play Program May Improve Cognition, Behavior in PWS Children

A remote play-based intervention program improved pretend play skills, cognition, and behavior in children with Prader-Willi syndrome (PWS), a small study shows. The preliminary findings support the validation of this remote approach in larger studies of a patient population with a high unmet need for effective behavioral interventions, researchers said. The…

EURORDIS Award Contest Welcomes Photos of Life With Rare Disease

The annual EURORDIS Photo Award contest is inviting people worldwide to visually express what life is like with a rare disease, while raising awareness through their work of these disorders. Submissions for next year’s awards are open until Jan. 31. The competition is organized by France-based EURODIS, an alliance…