I M Rare & Aware Skate-a-thon for Rare Disease Awareness and Research

THANK YOU FOR HELPING US RAISE FUNDS 

FOR RARE DISEASE RESEARCH AT SICKKIDS 

 

Medical advances have saved lives and changed futures. But children and youth with hard-to-treat illnesses, complex conditions, and rare diseases continue to suffer.  


Five years is the average time for a rare disease to be diagnosed. Families currently endure an odyssey of testing that often fails to lead to an accurate diagnosis, let alone treatment. 

 

At SickKids about 70% of our patients have a genetic component to their illness. Diagnosis is the stepping stone to treatment and community support, but it can be elusive for patients with rare diseases.  

 

We urgently need innovative solutions that end the uncertainty for children with hard-to-diagnose and hard-to-treat rare diseases. 

 

Funds raised for the Rare Diseases Initiative will help SickKids: 

 

  1. DIAGNOSE MORE by developing new diagnostic methods and tools with the latest advances in genome sequencing 

  1. ADVANCE DISCOVERIES by generating disease models for patients to test repurposed drugs and individualized therapies 

  1. SUPPORT FAMILIES by establishing a coordinator role to help patients with rare diseases navigate pathways from diagnosis to treatment