Patient and Caregivers

Natural History Study

Natural history studies are vital to understanding rare diseases. It studies the hallmarks of the disease and how they progress over time, while unfolding patterns that might otherwise go unnoticed. A longitudinal natural history study can track the course of the disease from inception to the point that the patient is chronically disabled to beyond. It is intended to describe all aspects of the disease and identify demographics, genetics, environmental impact, and other variables that correlate with the disease and outcomes.  The Wolverine Foundation is working with Columbia University to support this important study. 

Click here to join this important research initiative

CUREMAPK8IP3

This website serves as a support group for  MAPK8IP3 families and helps new patient families navigate shared questions, environments and experiences.

Click here to learn more and join the group!

NORD

If you learn that your child has a rare disease, experts recommend Tapping into rare disease resourcesThe National Organization for Rare Disorders is a nonprofit dedicated to helping individuals with rare disease. It also serves as an umbrella organization for advocacy groups around specific diseases.

 

Are you a parent or caregiver of a patient who has been diagnosed with MAPK8IP3-related genetic disorder?

Patients & Caregivers

Research 

Scientist or Research Inquiry?