Hypothalamic Obesity Update in NORD’s Rare Disease Database

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Hypothalamic Obesity (HO) is a rare condition often brought on by injury of the hypothalamus from a brain tumor or brain tumor treatment. The condition can result in a spectrum of symptoms including hyperphagia, or an abnormally increased appetite of varying intensity and an uncontrollable weight gain that does not typically respond to diet or exercise.

There is no real reliable treatment for this condition which presents a substantial unmet need and the implications of the condition are far reaching. Not only is there the chance of morbid obesity, but incessant hunger can be very difficult on the patient, caregiver and family members. Long-term sufferers may face other chronic conditions including type 2 diabetes, non-alcoholic fatty liver disease and heart conditions

The hypothalamic obesity patient community, treating clinicians and researchers and the Raymond A. Wood Foundation are working together to better communicate the complexity of this condition and differentiate it from standard obesity in hopes to find a standard of care and to support development of treatment options.

As part of this effort, the definition of hypothalamic obesity was updated in the National Organization for Rare Disorders (NORD) Rare Disease Database to accurately reflect the prognosis of HO, the history, signs and symptoms, causes, diagnosis, therapies and resources.

RAWF thanks Shana E. McCormack, MD, MTR, Scientific Director, Neuroendocrine Center in the Division of Endocrinology and Diabetes, Children’s Hospital of Philadelphia; M. Jennifer Abuzzahab, MD, Pediatric Endocrinologist, McNeely Pediatric Diabetes Center and Endocrine Clinic, Children’s Minnesota; Ashley H. Shoemaker, MD, MSCI, Assistant Professor of Pediatrics, Vanderbilt University Medical Center; and Christian L. Roth, MD, Professor, Seattle Children’s Hospital, for preparing and updating this report.

Read the full report here »

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