Non-Profit - Rosemount, MN, US
OUR MISSIONKrabbeConnect's mission is to be the source of comprehensive information and access to resources for patients with Krabbe disease. The foundation will drive state of the art research by bridging the gap between science and patient knowledge.OUR VISIONA day in which each patient receives early diagnosis, state of the art care, and lives a life free of disease.OUR MULTICENTER APPROACHKrabbe Connect is committed to pioneering a patient-centered care model and strengthening groundbreaking research by engaging the patients and caregivers with the Krabbe research community, to ensure the needs of Krabbe patients are being voiced. This multi-center collaborative cause will bring improved science, institute data sharing, establish standards of care for all courses of treatment, provide educational videos and continuing education courses, develop an industry-standard patient registry, and be a resource for clinical trial opportunities.
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