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.
Current & Upcoming Events
August 23, 2025
Bloom for a Cure: A Family-Friendly Event at Hershey Gardens
Join us for a heartwarming and joyful evening at the beautiful Hershey Gardens as we unite to raise awareness and vital funds for Krabbe disease research. This special event brings families, friends, and community members together in support of a meaningful cause — helping children and families affected by this rare and life-threatening condition. One […] Read More
August 23, 2025
Connor’s Kure for Krabbe
Join us for Connor’s Kure for Krabbe, a heartfelt fundraising dinner event held at the stunning Coeur d’Alene Resort overlooking the crystal waters of Lake Coeur d’Alene in Coeur d’Alene, Idaho. This special evening is dedicated to honoring the life of Connor, a brave little boy who courageously fought Krabbe disease before sadly losing his […] Read More
Ongoing
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
Know someone who's making a real difference in the rare disease community? It's time to recognize their impact! Nominations are now open for the 2025 #RAREVoiceAwards by the EveryLife Foundation!
Click here to get started - bit.ly/3Gv2WmINominations are now open!
We’re thrilled to celebrate the 14th year of the RareVoice Awards, honoring rare disease advocates who are making real policy change at the state or federal level.
Know someone who has advanced legislation or elevated the voices of the rare community in 2024 or 2025? Nominate them today! bit.ly/3Gv2WmI
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Regardless of disease subtype or whether a child has undergone a transplant, families consistently spend over 40 hours per week—equivalent to a full-time job—providing care.
With recent Medicaid cuts, this burden is intensifying, as families are forced to absorb even more of the cost and coordination of complex care, often without adequate support.
These reductions not only jeopardize access to essential services but also threaten the physical, emotional, and financial well-being of caregivers already stretched to their limits.
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Donated item. Please email us if you’re interested in receiving this chair at info@krabbeconnect.org. All requests are evaluated on a first come first serve basis.
Additional details here - bit.ly/3IgtBUC
#curekrabbe #krabbeconnect
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Maryland has become the 13th state to screen for #krabbedisease
This success would not be possible without Love for Lily and Baby Parker's Promise! Thank you for your fierce advocacy.
#curekrabbe #newbornscreeningsaveslives
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Thank you to all the amazing families who joined us at the Krabbe Family Warrior Meeting! 💚 Your strength, stories, and support mean everything to us at KrabbeConnect. Together, we build hope, connection, and a brighter future for all Krabbe warriors.
A special thank you to our sponsors:
Rosenau Family Research Foundation
Bravery for Avery
Dawson’s Drive to Save Lives
#curekrabbe #KrabbeConnect #StrongerTogether
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