Author Archives: Mary Chapman

Pandemic Won’t Stop Rare Disease Day on Feb. 28

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…

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…

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…

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…

Recreational Therapy for Fabry Disease Patients

Living with a chronic disorder such as Fabry disease can lead to anxiety, stress, and feelings of isolation. Recreational therapy may help to improve your psychological and physical well-being. About Fabry disease Fabry disease is a progressive rare genetic disease that results from the abnormal buildup of a type…

Sleep Hygiene for Fabry Disease

People with Fabry disease frequently experience sleep problems. Because a good night’s sleep is essential to physical and mental health, as well as your quality of life, it may be beneficial for you to practice sleep hygiene. About Fabry disease and sleep disturbances Researchers don’t understand exactly how Fabry disease causes…