Rare Disease Foundation


For runners that choose to support the Rare Disease Foundation, registration fees will be reimbursed for any runner that achieves 5x their registration fee in pledges. So for those running the marathon, the $60 registration fee will be reimbursed for a minimum of $300 in pledges.

In addition, Rare Disease Foundation will give each runner an identifiable team shirt, which they may keep.

All proceeds will benefit our research funding and family support programs.

The Rare Disease Foundation is focused on linking basic science and clinical practice to increase the efficiency of rare disease research. This model is called Translational Care. This model drives patient based, treatment focussed research projects from disease characterization to treatment with greater efficiency. By incorporating research, astute clinician observation and parental knowledge into the various stages of rare disease research we impact the speed of discovery and the way rare conditions are managed.