ALGSA is partnering with My Rare ID to support rare disease patients with emergency digital medical record hosting. My Rare ID is a cloud-based platform that provides instant access to your digital health records.

In a medical emergency, rare disease patients might need help communicating crucial medical details. My Rare ID supports patients in providing instant access to important and potentially live-saving information.

“Alagille Syndrome patients need on-demand access of important medical records in times of emergent medical care needs,” said Roberta Smith, ALGSA President. “Having quick access to allergies, a current medication list, recent test results, a condensed but comprehensive overview of the disease and personal medical involvement could be life-saving. We are proud partners of My Rare ID and support necessary tools and resources that make living and dealing with Alagille Syndrome a little easier.”

Our ALGSA package not only features a custom-printed card back featuring the ALGSA logo, but includes important ALGSA-approved links on each patient profile, ensuring that accurate and vetted information is available for treating EMS and physicians.

Sample Alagille Patient Card
ALGSA Card Back

When you purchase a My Rare ID through ALGSA, a portion of proceeds will benefit ALGSA. Get your My Rare ID pack here.


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