Welcome to KrabbeConnect
KrabbeConnect is dedicated to improving care and finding a cure for Krabbe disease through collaboration across a network of patients, advocates, doctors, researchers, and organizations. Our goal is to bridge science and patient knowledge to improve care and find a cure. We are committed to a patient-centered approach, ensuring that the voices of patients and caregivers guide research and care.
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
November 28, 2025
2025 Krabbe Family Holiday Grant Program
As the holiday season approaches, we understand that it can be a time of both joy and challenge for families affected by Krabbe disease. We believe in the power of community, support, and sharing love during this special time. We are excited for the 4th year of the “Krabbe Family Holiday Grant Program,” an initiative […] Read More
December 31, 2025
2025 Match My Gift to KrabbeConnect
Many families impacted by Krabbe disease often need relief from time to time. Help with a mortgage or rent payment because their loved one has been hospitalized for more than 4 months. Assistance in covering expensive medicines. Financial support for a therapy that brings their loved one pain relief. Or simply just a little holiday boost to feel supported during a burdensome journey navigating Krabbe disease. Read More
ONGOING
Be the Story — Krabbe Disease Newborn Screening Campaign
Are you interested in being the face of our Krabbe disease newborn screening state fact sheets? We’re on a mission to help bring more education and awareness to Krabbe disease newborn screening. All 50 states must be testing for this condition now to prevent a delayed diagnosis, especially in the most severe forms. You can be the story to help change Krabbe disease. See which states across the USA do not have a Krabbe disease fact sheet. If your state is not listed, we invite you to share your story. Read More
Our Patient Assistance Program is one of the most utilized services we offer—reflecting the significant financial burden families face when caring for a loved one with Krabbe disease.
The chart below highlights the average annual costs associated with care, with ranges varying by disease type and treatment status:
Infantile Krabbe Disease (IKD), transplanted late or not at all: $0–$75,000
Infantile Krabbe Disease (IKD), transplanted early: $0–$12,500
Later-onset Krabbe Disease (LIKD), transplanted late or not at all: $0–$20,000
Later-onset Krabbe Disease (LIKD), transplanted early: $0–$2,500
Your generosity makes our patient assistance program possible. Thank you to everyone who continues to give—your compassion helps ease the heavy financial and emotional load families carry every day. 💚
#curekrabbe #krabbeconnect
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🎁 Holiday Grant Opportunity for Krabbe Families
We are proud to announce the KrabbeConnect Holiday Grant Program—designed to help families impacted by Krabbe disease cover special holiday expenses and brighten the season.
If you’re a family navigating Krabbe disease and could use some extra support this holiday season, we invite you to learn more and apply-
👉 krabbeconnect.org/kcevent/krabbe-family-holiday-grant-program/
#KrabbeFamily #HolidayGrant #KrabbeConnect #SupportFamilies #HopeAndJoy
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KrabbeConnect extends our heartfelt gratitude to all the families who helped make a difference. Because of your voices and advocacy, future children diagnosed with Krabbe disease in these states now have a chance at life. Together, we’re building a brighter future.
The best part - Oregon and New Mexico will report out all forms of #krabbedisease
#krabbeconnect #newbornscreening
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Wishing you a spooktacular Halloween! 🎃
From all of us at KrabbeConnect, we hope you and your little goblins have a fun, safe, and candy-filled night!
We’d love to share more of your Halloween moments in the years to come—attach your photo below to give us permission to feature your adorable goblins in future posts and celebrations.
Happy Halloween from your KrabbeConnect family! 🕸️🦇
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As the holiday season approaches, we know it brings both joy and challenges for families affected by Krabbe disease. We’re honored to launch the 4th annual Krabbe Family Holiday Grant Program—offering financial assistance to help ease the burdens of the season. Priority will be given to new applicants, but we’ll do our best to accommodate all families who apply.
Stay tuned - application coming soon!
#curekrabbe #krabbedisease #krabbeconnect #holidaygrant
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KrabbeConnect is encouraging states to use a psychosineDue to the enzyme deficiency in Krabbe disease, psychosine accumulates in the nervous system of affected individuals. Psychosine, a galactolipid, is a cytotoxic type of lipid, that has destructive pr level greater than 2 nM ( versus greater than 10 nM) as the threshold when confirming a diagnosis of Krabbe disease.
Why does this matter?
Using this lower threshold helps ensure that children with late-onset forms of Krabbe disease are identified as early as possible. Early detection means families can access treatment and care before symptoms progress, reducing the risk of permanent damage.
💬 What do you think? Your feedback helps us advocate for the best outcomes for all families affected by Krabbe disease. Comment below!
#curekrabbe #KrabbeDisease #krabbeconnect
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