KrabbeConnect

Connecting Patients and Research

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Mission & Vision

KrabbeConnect'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. The organization seeks to revolutionize the practice of medicine by identifying, optimizing, and implementing advances in the care and cure of globoid cell leukodystrophy, utilizing a multicenter network. The organization’s goal is to achieve complete disease eradication through cooperation between patients, patient advocacy groups, clinicians, researchers, industry, and government. The organization is dedicated to the cooperative planning, implementation, analysis and reporting of controlled clinical trials, as well as observational studies and educational activities within the Krabbe community.

Vision

A day in which each patient receives an early diagnosis, has access to state-of-the-art care, and lives a life free of Krabbe disease.

OUR MULTICENTER APPROACH

KrabbeConnect 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.

Become a Partner

Are you looking to help make a difference for patients and families living with Krabbe disease?  KrabbeConnect wants to collaborate with you! LEARN MORE

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Contact Us

KrabbeConnect
P.O. Box 264
Rosemount, MN 55068-0264

(651) 252-4117
Info@KrabbeConnect.org

OUR VISION

A day in which each patient receives an early diagnosis, has access to state-of-the-art care, and lives a life free of Krabbe disease.

Newly Diagnosed

  • Treatment and Resource Maps
  • Understanding Krabbe Disease
  • Infantile / Late-Onset
  • Testing, Treatment and Clinical Care
  • Transplant for Krabbe Disease Therapy

Patients & Caregivers

  • Connect with a Clinical Expert
  • Genetic Counselor/Care Team Knowledge
  • Advocating for Your Patient
  • Connect with Kevin

Research & Education

  • Research, Studies & Trials
  • Clinical Trial
  • Brain and Tissue Bank
  • Listen and Learn Webinars
  • KrabbeConnect Library
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Pennsylvania (Opt-In)

Currently Krabbe disease is not automatically screened for in the state of Pennsylvania. Parents must request or “Opt-In” to have Krabbe added to the newborn screening tests done at birth.

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