Welcome to KrabbeConnect
KrabbeConnect seeks to revolutionize the practice of medicine by identifying, optimizing, and implementing advances in the care and cure of Krabbe disease and globoid cell leukodystrophyAnother name for Krabbe disease, a rare and usually fatal disorder of the nervous system., utilizing a multicenter network. Our goal is to achieve complete krabbe 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!
Current & Upcoming Events
June 1, 2025
2025 Swing for Saylor Golf Tournament
KrabbeConnect is excited to introduce a new and meaningful way to bring our community together—one that raises awareness and vital funds to support families affected by Krabbe disease. We are proud to announce the Inaugural Swing for Saylor Golf Tournament, set to take place on Sunday, June 1st, 2025, at Emerald Greens Golf Course in […] Read More
June 28, 2025
2025 Krabbe Family Warrior Meet-up at the United Leukodystrophy Family Conference
This family meet-up will feature Krabbe-specific scientific, advocacy, and family support sessions. This meeting is designed to empower patients and their families by providing information and tools to help navigate Krabbe disease. KrabbeConnect wants you to use this time to connect and learn from others walking in your shoes, hear from the medical and research community on […] Read More
See’s Candies to Help #curekrabbe
Sweeten hearts and change lives! Join Krabbeconnect’s Year-Round Candy Drive. Your support will help satisfy sweet cravings and fuel research for those affected by Krabbe disease. This is a great way to send a gift to others while making a difference with your purchase! Participation is simple. Here’s how it works: You can ship […] Read More
Did you know that animals significantly help children heal emotionally and physically from health conditions? That’s why we’re over-the-moon excited to welcome Akin Hills Pet Hospital as our first Silver sponsor!
Please help us thank Akins Hills Pet Hospital for helping us move our mission forward for #KrabbeDisease
Also, please like, follow, and share our Swing for Saylor event page here - www.facebook.com/share/1Aa2e7ypo5/
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Happy Monday - don't forget to grab your spot today to save on registration. Get started today by clicking this link- bit.ly/4iNlV9R
We can't wait to embrace each family impacted by #krabbedisease
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Take a look at Jasper’s inspiring story. Thanks to #newbornscreening, his life was saved after being diagnosed with Krabbe disease.
Today, Jasper is thriving and enjoys going to school. One of his favorite things is riding the bus! We encourage you to share his story with your state’s newborn screening advisory council and urge them to add #KrabbeDisease to the state screening panel.
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A Tuesday friendly reminder!
Get started today by clicking this link- bit.ly/4iNlV9R
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We invite you to share your voice! Akron Children's Hospital Leukodystrophy Clinic is conducting a survey on the financial burden of leukodystrophies. This survey is brief (15-20 min) and anonymous. The first 100 participants who take the survey will receive a token of appreciation.
Get started here today -
redcap.chmca.org/redcap/surveys/?s=9TTFLNA3A4H4CENF
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Join us Sunday, June 1st to "Swing for Saylor," and others impacted by #krabbedisease. We want to fill the course! Your participation helps further the mission and work of #krabbeconnect.
Scan the QR code to purchase tickets or learn more about this event!
#curekrabbe
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