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
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
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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What a great way to recognize a provider - now accepting nominations until April 30th. See details below!
The 2025 Courageous Provider Award: Nominations are OPEN!
bit.ly
The Courageous Provider Award annually recognizes clinicians providing exceptional family-centered care in circumstances of serious childhood illness. Nominees0 CommentsComment on Facebook
Wahoo—registration is now open. We can't wait to bring #krabbedisease families together and provide you with the latest updates. This is a safe space for all families to gather and feel supported and loved.
#curekrabbe
2025 Krabbe Family Warrior Meet-up at the United Leukodystrophy Family Conference - KrabbeConnect
krabbeconnect.org
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 t...1 CommentComment on Facebook
This will bless so many families trying to navigate the Krabbe journey!
We're thrilled about this grant! It was inspired by KrabbeConnect, and we’re fully committed to supporting it every step of the way. Our goal is to make it easier for families navigating a Krabbe disease diagnosis by providing deeper insights into the condition’s characteristics, ultimately enhancing the conversation with newly diagnosed patients.
Read more here- lnkd.in/g7-E7cGm
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For a registry? Why not towards finding a way to restart gene therapyA type of therapy that offers hope and promise for a cure for many genetic disorders. A working copy of the gene replaces the non-working copy of the gene. Gene therapy is at the forefront of many trials?
Yay!!!! Thankful these parents will now how better care for their little ones!
Hail to the Victors -- in so many ways!
Congress is considering massive cuts to the Medicaid program, putting health care access at risk for millions of people living with a rare disease. #krabbeconnect stands with the National Organization for Rare Disorders, Inc. (NORD) in mobilizing advocates and fighting for the #raredisease community, but we need your help!
First, take action by contacting your lawmakers here - rarediseases.org/driving-policy/take-action/#/250 - It takes one minute!
Second, NORD is looking to harness the power of storytelling to help advocate for this critical program. Congress needs to understand what is at stake for our community. If you’d be willing to share your Medicaid story to help us advocate, please contact stories@rarediseases.org.
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When caregivers had the opportunity to describe the irritability using one word, they most often described it as “horrible” and “exhausting” This information came from Parent-Reported Disease Burden in Infantile and Late Infantile Krabbe Disease; A Comparison of Quality-of-Life Outcomes in Transplant and Non-or-Late Transplant Patients.
More details about the outcomes of this study will be presented at the Krabbe Family Warrior Meeting on June 28th - registration opens next week.
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