Mary Chapman, features writer —

Prader-Willi syndrome (PWS) Awareness Month happens every May to celebrate the global PWS community and call attention to its needs and there are a host of ways to participate this year. The goal is to heighten PWS awareness among lawmakers, scientists, public authorities, health professionals, and the general…

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 Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference…

The Foundation for Prader-Willi Research (FPWR) is presenting Harvesting Hope for PWS, a virtual “turkey trot” distance challenge to raise awareness about Prader-Willi syndrome (PWS), support research, and promote health and exercise. The nonprofit organization is encouraging supporters of all ages to log up to 100 miles walking, jogging,…

At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

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 National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

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 series features people living with rare diseases, including PWS, along with their caregivers, and healthcare professionals. The…

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 the recognition, diagnosis, understanding, and management of Prader-Willi syndrome (PWS), a genetic disorder characterized by weak muscles, slow growth,…

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…