Resource Library

Disease Management

National Comprehensive Cancer Network Patient Resources

The National Comprehensive Cancer Network (NCCN) has published clinical guidelines for histiocytic neoplasms. While histiocytosis does not currently have patient guidelines, there are many great resources the NCCN provides. NCCN Guidelines for Patients, NCCN Patient Resource Card, and Questions to Ask About Cancer Care.

AVP Deficiency Card (Wallet or Purse Sized)

The Pituitary Foundation AVP Deficiency Card 2023 This is a card created by the Pituitary Foundation for AVP Deficiency to help people inform their doctors of their condition. Especially useful if they ever need to go to the ER or change doctors. The QR code on the card takes the…

How to take Desmopressin safely and the importance of BREAKTHROUGH.

Guidance for management of Desmopressin and the importance of BREAKTHROUGH. Developed by: Dr. Cihan Atila, MD, PhD at University Hospital Basel, Department of Endocrinology, Diabetes & Metabolism and Pat Gildroy, Moderator of the “Got DI?” Facebook Group Click this chart for a visual representation. See below for a written explanation….

Management of AVP-D Patient Card

Right Click–> Save as or Print to print out and keep in your wallet or purse in case of emergency as a resource to share with your doctor. Disclaimer: The points listed on this card are all possible points of care, which your doctor may need to adjust as necessary…