Due to the rarity of CRMO, more research is needed to determine the molecular mechanism of the disease at the cellular level which will identify candidate targets for new drug development or repurposing existing drugs for use in CRMO patients. More research will also help simplify diagnosing and monitoring the disease, leading to better treatment plans and quality of life.

Funds raised through the foundation will support CRMO research. Identification and prioritization of the Foundation’s research goals is underway and involves the participation of multiple formal and informal professional advisors from across the spectrum of basic science through translational and clinical researchers and scientists.

We have already initiated an international patient-powered patient registry (PPPR) in collaboration with the Coordination of Rare Diseases at Sanford (CoRDS).

This PPPR will help count the number of CRMO patients worldwide and document their geographical distribution. Patient-entered responses to disease-specific questions will help answer patient’s questions as well as begin to build a powerful data set through which the research community will be able to address questions and formulate new ones to help understand this rare disease. Learn More