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
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
January 2026
2026 Super Bowl Square Challenge
Super Bowl squares, also known as football squares, are often a fun staple of Super Bowl parties everywhere. In 2018 we initiated this fundraiser as a fun way to drive excitement about our mission at KrabbeConnect which is, to be the source of comprehensive information and access to resources for patients with Krabbe disease. The foundation will drive state-of-the-art research by bridging the gap between science and patient knowledge. Read More
Happy Holidays from all of us at KrabbeConnect.
We are deeply grateful for each and every one of you who follows, supports, and believes in the work we do. Your compassion, advocacy, and generosity carry this mission forward and give hope to families facing Krabbe disease every day.
Together, we hold onto a shared vision: a future where every person diagnosed with Krabbe disease can live a full life—free from the burden of this disease. Until that day comes, please know how much your support truly means to us.
Wishing you and your loved ones peace, warmth, and hope this holiday season.
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As we reflect on 2025, we are overwhelmed with gratitude. 💚
To our incredible corporate partners—thank you for standing beside KrabbeConnect and the families we serve.
Your generosity fuels our mission to support patients, advance research, and advocate for early diagnosis and improved care. Because of you, families facing Krabbe disease had access to resources, community, and hope this year.
While the list of supporters is extensive and continually growing, we want to express our sincere appreciation to the many businesses who contributed time, funding, expertise, and compassion. This message is not all-inclusive—but every single contribution mattered.
Our families thank you. Our team thanks you. And together, we are making progress toward a cure.
#krabbeconnect #ThankYouSponsors #corporatepartners #gratitude #supportfamilies #hopeforkrabbe
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Amazing News! Our publication has been accepted by Orphanet Journal of Rare Disorders. A few last steps are needed before the journal will make it available to the public.
This milestone matters because:
*40+ families courageously participated, sharing detailed insights into their journey with Krabbe disease.
*Families met virtually with Engage Health to provide robust, real-world data about the challenges and decisions they faced.
*Dr. Nicholas Bascou and Dr. Paul Orchard provided expert oversight—ensuring the data was carefully reviewed, analyzed, and categorized to the highest scientific standards.
*This is the first study of its kind in Krabbe disease to compare caregiver burden across transplant timing and disease onset.
*These findings will help families and clinicians make more informed decisions about transplant and support future research, care, and advocacy efforts.
This publication is a testament to the strength of the Krabbe community and the ongoing commitment to improving care, quality of life, and access to treatment.
This critical research required an investment of more than $200,000, generously funded through a grant from the Rosenau Family Research Foundation.
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ICYMI - Stacy went live today to talk about the $25,000 Match Campaign
You can text the phone number 707070- text the phrase - [krabbematch25] - you will receive a direct link to donate or click here: www.pledge.to/2025-match-my-gift-to-krabbeconnect
www.facebook.com/share/v/1KfHVSVMXk/
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