Patient Toolkits Available in Multiple Languages

Receiving a Castleman disease diagnosis can feel overwhelming, confusing, or even frightening — but you are not alone. This toolkit was created to give patients and their loved ones clear, compassionate guidance during one of the most uncertain moments of their lives. Inside, you’ll find easy-to-understand information about the different types of Castleman disease, how it is diagnosed, what symptoms may look like, and the treatment options available. Because CD is rare, many people struggle for answers at first. Our goal is to help you make sense of what’s happening and reinforce that there is a community here for you—one filled with experts, caregivers, and fellow patients who understand what you’re going through.

You’ll also find practical tools, questions to ask your doctor, and resources to help you connect with experienced physicians and supportive peers. Whether you are a patient, caregiver, family member, or friend, this toolkit is designed to guide you step-by-step and help you feel more empowered and less alone. While the path ahead may feel uncertain, there is real hope, ongoing research, and a strong global community dedicated to improving care and finding a cure. Welcome — you are in the right place, and we are here to walk with you.