YOUR STORY CAN CHANGE THE FUTURE OF CARE
Join the Hypothalamic-Pituitary Brain Tumor Patient Registry and help researchers better understand life after diagnosis, treatment, and survivorship.

Understanding Craniopharyngioma

HomeUnderstanding Craniopharyngioma

Learn more about how we support patients, families, and clinicians navigating craniopharyngioma.

A Rare Brain Tumor with Lifelong Impact


Craniopharyngioma is a rare, non-malignant tumor that typically develops near the pituitary gland and hypothalamus which are two areas critical to hormone regulation, metabolism, growth, and behavior. Although these tumors do not spread to other structures like cancer, they are highly recurrent and can cause significant health problems due to their location and the lasting effects of treatment.

For Patients & Caregivers

Learn more about craniopharyngioma, treatment effects, and support resources available through RAWF educational tools and community connections.

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For Clinicians and Researchers:

If you’re a healthcare provider or researcher, find out more about our patient registry, DI support programs, and collaboration opportunities.
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Creating Community

RAWF unites patients, caregivers, clinicians and researchers at our bi-annual family conference in Philadelphia.
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Join Our Patient Registry

Your voice is crucial in addressing the challenges of hypothalamic obesity and hyperphagia! Join us in shaping the future of research by enrolling in the Hypothalamic Pituitary Brain Tumor Patient Registry. Your participation, at your own pace, will contribute valuable insights to better understand and treat these conditions

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