Persons diagnosed with craniopharyngioma often experience fatigue and lack of energy in the aftermath of the tumor and/or its treatments. In collaboration with the Raymond A. Wood Foundation, Rhythm Pharmaceuticals is launching a new registry study to better understand experiences with fatigue and factors that may affect it, such as weight gain and daytime sleepiness. The overall goal of the study is to evaluate the burden associated with fatigue and assess approaches for its management. All persons who have been diagnosed with craniopharyngioma, or their caregivers, are eligible to participate in this registry study. To participate, please visit www.rawoodfoundation.org/hptumorregistry to enroll into the Hypothalamic-Pituitary Brain Tumors Patient Registry and fill all the surveys. For those who are already enrolled in the registry, please log into your registry account: https://hptumorregistry.iamrare.org/ Survey participants will receive a $50 Visa electronic gift card upon ...

We are pleased to announce the launch of a new RAWF research study on the perspectives of craniopharyngioma survivors and their caregivers on treatment priorities and the impact of the disease on their quality of life. Many craniopharyngioma survivors experience several health issues that may interfere with their daily activities or their ability to achieve long-term goals as a result of their disease. In this study, we would like to understand how craniopharyngioma survivors have been impacted by those health challenges, which treatments they do or did receive for these issues and how they do or did work, and which health issues they would prioritize for development of new treatments. Additionally, we have implemented a questionnaire to evaluate the impact of craniopharyngioma on the quality of life of craniopharyngioma survivors. To enroll into the Hypothalamic-Pituitary Brain Tumors Patient Registry, please ...

We are pleased to announce the launch of Hypothalamic-Pituitary Brain Tumors Patient Registry! The Hypothalamic-Pituitary Brain Tumors Patient Registry creates a platform for patients around the world to strengthen their voices and share information about rare hypothalamic-pituitary brain tumors, diseases that can cause hormonal deficits, visual impairments, psychosocial problems, cognitive impairment, and hypothalamic dysfunction with temperature dysregulation, sleep problems, obesity and hyperphagia. Designed with the input of scientists and patients, this global resource will provide data for researchers to advance research and guide the development of treatments for critical unmet needs of our community. Join now and let your data tell your story!