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
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!

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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Add your Hero Impacted by Krabbe disease
Did you know that our hero page was created to recognize each, and every individual diagnosed with Krabbe disease? Learn why this page is so important and how you can upload a photo or update your existing hero photo now.
Upcoming Events
Join us for our 4th annual "A Million Dreams Gala" on Friday, August 19th, 2022! This premium event is fun, educational, and gives you a chance to party with a purpose. We will definitely be in person, however, further details are pending at this time. It’s going to feel good to hug each other again and congratulate some instrumental successes in our community. Tickets are available for purchase now!
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