Code Rare Program

Code Rare® is a 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 evidence-based resources for medical teams taking care of patients with rare diseases. 

 

The mission of Code Rare® is to inspire medical teams to collaborate with rare experts, nonprofits, patients, and families 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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