aHUS Journey Patient Resource Kit (Alexion Pharmaceuticals, Snow Companies)
Atypical hemolytic uremic syndrome (aHUS) is a genetic, chronic, and life-threatening ultra-rare disease that can progressively damage vital organs, such as the kidneys.
Generally, patients receive their diagnosis and first treatment in emergency situations and are often overwhelmed, fearful, and uncertain about next steps.
Alexion Pharmaceuticals, in partnership with Snow Companies, designed the aHUS Journey Patient Resource Kit to help aHUS patients navigate this uncertainty with greater confidence. Alongside treatment brochures, the kit contains information on support programs, webinars, community engagements, and opportunities to get involved as a patient advocate.
In parallel with the physical kit, the team launched aHUSjourney.com, a “digital kit” providing access to the same resources through an alternative channel.
Community feedback on the kit has been resoundingly positive. Fittingly, the kit’s PM360 Silver Award recognition was announced on the eve of the 7th Annual aHUS Awareness Day. The team hopes this recognition will help to further awareness for this ultra-rare community.