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Code Rare® is a pilot program spearheaded by a paramedic and passionate registered nurse with a rare disease as a vital nationwide call to action: #MakeRareVisible! 


CODE RARE® shall be initiated by First Responders and hospitals to trigger immediate education delivery and specialized resources by Rare STRIDES® nurses for medical teams taking care of patients with rare diseases. 


The mission of Code Rare® is to inspire medical teams to collaborate with nonprofits, patients, and families through Rare STRIDES® Nurses Speaker’s Bureau to advance understanding about next steps, diagnostics and patient-centered clinical care delivery for rare diseases. 

The goal of Code Rare® for patients and families is to support and improve the quality of life for children and adults with rare diseases in all aspects of their healthcare journey. 

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