Patients with Pompe disease may need constant care. Providing such care can be mentally, physically, and emotionally depleting for a…
Articles by Mary Chapman
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and…
The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to…
Living with a chronic disorder such as late-onset Pompe disease can lead to anxiety, stress, and feelings of isolation.
If you have late-onset Pompe disease, you likely will need to see many specialists such as pulmonary physicians, cardiologists,…
To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients…
Rare and chronic conditions such as Pompe disease can take an emotional toll on patients and caregivers on top…
If you have late-onset Pompe disease, you’re likely dealing with muscle weakness, aches, and cramps, and possibly headaches and…
Newborn screening for Pompe disease can help improve outcomes for babies and prevent a long diagnostic journey. Following is…
A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be…