At the Raymond A. Wood Foundation (RAWF), we are committed to advancing craniopharyngioma research by centering the lived experiences of patients and caregivers.
Our work focuses on understanding the real-world impact of hypothalamic-pituitary brain tumors—translating patient insights into evidence that informs care, guides research, and strengthens advocacy.
While our current studies focus on craniopharyngioma, this work contributes to a broader effort to improve outcomes across hypothalamic-pituitary brain tumors and related conditions, including hypothalamic obesity.
Explore Our Research
Treatment Priorities in Craniopharyngioma Research
Understanding patient-centered outcomes
This study explores how patients and caregivers evaluate treatment options for craniopharyngioma and what outcomes matter most in daily life.
Caregiver Impact in Craniopharyngioma
Understanding the caregiver experience
This study highlights the experiences of caregivers supporting individuals with craniopharyngioma and the important role they play in long-term care.
More Research Coming Soon
We are continuing to expand our research to better understand craniopharyngioma and related hypothalamic conditions.
Why This Research Matters
There is a critical gap in craniopharyngioma research, particularly in understanding long-term outcomes and quality of life.
Our work helps:
- Define patient-centered outcomes
- Improve understanding of hypothalamic impact
- Inform clinicians and researchers
- Strengthen advocacy for access to treatment
- Elevate patient and caregiver voices
Join the Hypothalamic-Pituitary Brain Tumor Patient Registry
We are committed to building research with the community.
The Hypothalamic-Pituitary Brain Tumor Patient Registry is a critical part of advancing hypothalamic brain tumor research and improving care.
By joining the registry, you help:
- Advance research in craniopharyngioma and hypothalamic disorders
- Ensure patient experiences inform treatment development
- Support advocacy for better care and access