Registry
The MHE Learning System (MHELS) is dedicated to improving the lives of people with MHE through collaboration and shared learning.
The MHE Learning System (MHELS), in partnership with the National Organization for Rare Disorders (NORD®), is developing a person-centered, longitudinal registry for people living with Multiple Hereditary Exostoses (MHE).
Research, advocacy, and clinical experience have significantly advanced our understanding of MHE. Yet important questions remain unanswered: How does disease severity vary across people with MHE? How does MHE progress across the lifespan? What predicts long-term outcomes? What symptoms and health issues (beyond bones) may be associated with MHE?
By collecting real-world information directly from individuals and families, the registry aspires to create a shared resource to better define the natural history of MHE, inform future standards of care, and support research priorities.
We are proud to share that we are National Organization for Rare Disorders (NORD) Members! This milestone reinforces our commitment to supporting the MHE community and connects us with a larger network dedicated to awareness, advocacy, and meaningful resources for rare diseases.
