KrabbeConnect

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KrabbeConnect 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. Our goal is to achieve complete disease eradication through cooperation between patients, patient advocacy groups, clinicians, researchers, industry, and government. We are 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. 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.

Our Heroes

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Leandra F.
Indiana

We are working towards 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. Help us celebrate all of the Krabbe disease Heroes and join the fight to #curekrabbe!

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What is Krabbe Disease?

Krabbe disease (pronounced krab A), is a rare genetic disorder, also known as globoid cell leukodystrophy. Krabbe disease is described as a severe neurological condition that results from the loss of the protective covering (myelin sheath) surrounding nerve cells. This protective sheath is essential to insulate the nerves and ensure the rapid transmission of nerve signals throughout the body.

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#curekrabbe News

Do you want to follow our journey, be notified of important news, or simply want to learn about research efforts to help #curekrabbe?  Join our hassle free mailing list now.  At KrabbeConnect, we have no intentions of overwhelming your inbox.  In fact, we guarantee you will receive less than 4 emails per month from our organization.  We just want you to be "in the know."  Sign up today!

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Upcoming Events

See what events and fundraisers we have currently going on! Join KrabbeConnect in helping to make a difference in the lives of those affected by Krabbe disease.

February 28, 2021 - Rare Disease Day: #BeRare Event

September 24, 2021 - SAVE THE DATE: A Million Dreams Gala 2021

 

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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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