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
February 28, 2026
2026 Rare Disease Day
What are you doing for Rare Disease Day 2023? Krabbe disease affects approximately 40 to 50 patients worldwide per year but on Tuesday, February 28th we are part of one BIG FAMILY as we celebrate Rare Disease Day along with the 7,000 other rare conditions. Read More
March 20, 2026
2026 Putt-Putt to #CureKrabbe
Join us for a fun evening of miniature golf while giving back to families impacted by Krabbe disease! Putt-Putt to #CureKrabbe brings together community members, professionals, and advocates for friendly competition, connection, and purpose. Why This Event Matters Funds raised through Putt-Putt to #CureKrabbe directly support individuals and families navigating Krabbe disease by: Your participation […] 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
For children identified through newborn screening as low-risk for late-onset Krabbe disease, progression in infancy is less likely — and follow-up can be thoughtfully tailored. We invite you to review the graphic below or check out the full publication here - pubmed.ncbi.nlm.nih.gov/33832819/
#curekrabbe #KrabbeDisease #krabbeconnect
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Caregiving for a loved one with Krabbe disease impacts far more than medical appointments.
This figure from our recent publication highlights the emotional and social burdens caregivers experience — from disrupted sleep and mental health strain to challenges in relationships with spouses, friends, extended family, and even other children in the home.
Across groups, caregivers reported meaningful impacts on:
💤 Sleep
🧠 Mental health
❤️ Relationships
💪 Physical health
These numbers represent real families navigating isolation, stress, and constant vigilance — often while managing complex medical care decisions like transplant timing.
At KrabbeConnect, we believe caregiver voice matters. Data like this helps clinicians, researchers, and policymakers better understand the true burden of disease — and why comprehensive support systems are essential.
📖 Read the full peer-reviewed article here:
pubmed.ncbi.nlm.nih.gov/41501923/
Because behind every data point is a family doing everything they can. 💛
#curekrabbe
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Happy Monday!
Part 2: (TOMORROW) at 4:00 PM - 5:00 PM CST | 5:00 - 6:00PM EST
This panel-style conversation centers on real stories from individuals who have navigated IVF with PGD/PGT-M, creating space for shared learning, meaningful questions, and community connection.
👉 Register here for Part 2- us02web.zoom.us/.../register/EJmOeqz9QIiQptyvQyvQxA
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Our community could use a little fun—and a lot of hope. Join us for Putt-Putt to #curekrabbe, where every putt helps support families impacted by Krabbe disease.
Learn, engage, and make a difference.
Register today here - krabbeconnect.org/kcevent/putt-putt-to-curekrabbe/
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While Grayson was in the hospital fighting for his health, his grandpa stepped up in another powerful way—by advocating for Medicaid so families like theirs can continue caring for medically fragile children at home.
Proposed cuts to Medicaid don’t just impact budgets—they impact real children, real families, and real lives. These programs allow kids like Grayson to receive the care they need at home, surrounded by family, rather than forcing already fragile systems into crisis.
When Medicaid is threatened, families lose critical home-based support, hospitals and care facilities become overwhelmed, and children face unnecessary disruption in their care. Advocacy like this matters—because no family should have to choose between being at a child’s bedside and fighting for the services that keep them safe.
Thank you to Grayson’s grandpa, and to all caregivers and advocates who raise their voices when it matters most. 💙
Protect Medicaid. Protect families. Protect kids like Grayson.
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Registration is OPEN! 🎉
Join us for a two-part webinar series on IVF with PGD/PGT-M—designed to help families understand their options and hear real-life experiences.
Part 1: (Feb 10th)- provides an overview of IVF with PGD/PGT-M, explaining how the process works, what genetic testing involves, and the important medical and emotional considerations families may face when navigating genetic risk.
👉 Register here for Part 1-https://us02web.zoom.us/meeting/register/79QCftJQRRidTTgEFq4oXQ
Part 2: (Feb 17th) - This panel-style conversation centers on real stories from individuals who have navigated IVF with PGD/PGT-M, creating space for shared learning, meaningful questions, and community connection.
👉 Register here for Part 2- us02web.zoom.us/meeting/register/EJmOeqz9QIiQptyvQyvQxA
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