Mary Chapman, features writer —

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…

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…

Living with a chronic disorder such as late-onset Pompe disease can lead to anxiety, stress, and feelings of isolation. If you have the disease, recreational therapy may help to improve your psychological and physical well-being. What is Pompe disease? Pompe disease is a debilitating and progressive disorder that’s…

If you have late-onset Pompe disease, you likely will need to see many specialists such as pulmonary physicians, cardiologists, and physiotherapists to help you manage the disorder’s different symptoms. To help with muscle weakness and other Pompe disease-related symptoms, it also may be beneficial to add a massage…

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…

Rare and chronic conditions such as Pompe disease can take an emotional toll on patients and caregivers on top of everything else. Between symptoms such as muscle weakness and fatigue, and feelings of isolation, coping can be a challenge. It may seem as if hardly anyone understands what…

If you have late-onset Pompe disease, you’re likely dealing with muscle weakness, aches, and cramps, and possibly headaches and fatigue. Many people may not understand how overwhelming all this can be, and it may not always be easy to explain. However, an analogy called the spoon theory can help…

Newborn screening for Pompe disease can help improve outcomes for babies and prevent a long diagnostic journey. Following is some information about newborn screening and how it can help the children and their parents. About Pompe disease Pompe disease is a rare genetic disease. It is characterized by…

A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, including amyotrophic lateral sclerosis (ALS). The organization’s panel of judges has pared the number of contest submissions…