KrabbeConnect

Connecting Patients and Research

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Our Affiliations

Finding the right people in the rare disease space to partner with, for the purpose of advancing our mission and meeting our goals, inspires our Board of Directors at KrabbeConnect. Our board values and promotes working together by sharing ideas, exchanging resources, brainstorming concepts, and fostering a culture of partnerships to achieve our ultimate goal, 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.

KrabbeConnect is currently affiliated with the organization listed below. Please click on each name to learn more about our partners mission, purpose, and collaborative efforts.

https://globalgenes.org/
NORD
Leukodystrophy Family Forum
http://www.lysosomaldiseasenetwork.org/
Beyond the Diagnosis - KrabbeConnect
https://ulf.org/
Patient Worthy logo
Krabbe-UK_final-Horizontal
LDNBS 2
Angel Aid

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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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