MENTAL HEALTH FOR RARE
A Collaborative Program for the Pompe Disease Community
Mental health challenges are a pervasive yet often overlooked aspect of people living with rare diseases. For individuals with Pompe disease, a rare genetic disorder that affects muscle function and respiratory health, the burden extends beyond physical symptoms to significant emotional and psychological stress. The uncertainty of disease progression, the burden of managing complex symptoms, and the challenges in accessing specialized care contribute to elevated stress, anxiety, and depression among individuals living with Pompe disease and their caregivers. However, despite the clear need for mental health support, access to appropriate resources remains limited.
The Mental Health for Rare team investigated these challenges by deploying an online survey circulated by Pompe Alliance and conducting 1-on-1 interviews with members of the Pompe disease community.
Research Findings: Pompe Community Members Face 2.5x Higher Risk of Mental Health Issues Compared to the General Population​​
Our research found that there is an urgent need for improved integration of mental health support within the Pompe disease community. To learn more about our findings, download our poster below.
Special thanks to the following sponsors
