Diencephalic syndrome

What is the long-term outlook for diencephalic syndrome?

The prognosis for individuals with diencephalic syndrome differs depending on the type of tumor associated and grade of the tumor. If left untreated, most with this condition will pass away within 12 months. With treatment, the long-term survival is greatly improved; however, even with treatment, the tumor may continue to grow slowly and there may be lasting symptoms related to issues with the hypothalamus and vision.

Last updated on 05-01-20

Where To Start

A Kids’ Brain Tumor Cure Foundation

A Kids’ Brain Tumor Cure Foundation provides information and resources for different conditions associated with brain tumors, including Diencephalic syndrome

Last updated on 04-27-20

Name: American Brain Tumor Association 8550 W. Bryn Mawr Ave, Ste 550
Chicago, IL, 60631, United States
Phone: +1-773-577-8750 Toll Free: 1-800-886-2282 Fax : +1-773-577-8738 Email: info@abta.org Url: https://www.abta.org/
Name: Children's Brain Tumor Foundation 274 Madison Avenue, Suite 1004
New York, NY, 10016 , United States
Toll Free: 1-866-228-4673 Email: info@cbtf.org Url: http://www.cbtf.org
Name: Pediatric Brain Foundation 2144 E. Republic Rd. Building B, Suite 202
Springfield, MO, 65804, United States
Phone: 417-887-4242 Email: info@pediatricbrainfoundation.org Url: http://www.pediatricbrainfoundation.org/
Name: A Kids’ Brain Tumor Cure Foundation PLGA Foundation 98 Random Farms Drive
Chappaqua, NY, 10514,
Email: contact@akidsbraintumorcure.org Url: http://akidsbraintumorcure.org

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The RareGuru disease database is regularly updated using data generously provided by GARD, the United States Genetic and Rare Disease Information Center.

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