Megan Crowley, Age 24
Living with Pompe Disease
Welcome to the Patient Advocacy section of our website. As the Chief Patient Officer, I am honored to welcome you to our community of patients, families, caregivers, and champions of change.
At the heart of everything we do is a deep commitment to listening, learning, and standing alongside you. Your experiences, your voices, and your needs are what guide our mission every day. Our programs are designed to reflect that commitment: a place where information, empowerment, and empathy come together.
Here, you’ll find resources tailored to help you navigate the rare disease landscape. We work hand-in-hand with the patient community to shape policies, influence research priorities, and ensure that every decision puts patients first.
Patient advocacy is more than a department, it’s a movement. And it begins with you.
Thank you for visiting. We’re honored to walk this path with you.
Warm regards,
Tiffany Patrick
Chief Patient Officer
We established the Patient Advisory Board (PAB) Program in 2008 to enhance our partnership with and understanding of the patient community.
Amicus is committed to carefully designed and considered paths to Expanded Access to our investigational drugs.
Access resources and helpful links for patients and families living with Fabry disease, Pompe disease, Batten disease, CDKL5 deficiency and other conditions.
Be inspired by people living with rare diseases across the globe.