well-being

Most children with Pompe report good emotional well-being in study

Most children and adolescents with Pompe disease adapted well to living with the chronic condition and had generally good emotional well-being, according to a small interview study involving patients and caregivers in Europe. Still, patients reported frustrations related to physical disabilities and their social impacts, as well as the…

Regular physical activity boosts well-being in adults with Pompe

Staying physically active according to the World Health Organization (WHO) guidelines and engaging in a personalized exercise program can significantly improve the physical well-being of adults with late-onset Pompe disease, a small study found. Moreover, regular physical activity was seen to delay disease progression among the study’s participants. “Endurance,…

Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe

The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to a survey conducted by Eurordis-Rare Diseases Europe. “People living with rare diseases in Europe have found themselves caught as collateral…