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
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
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
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
Join us August 23rd in Coeur d’Alene, Idaho for a heartfelt fundraising dinner, honoring the life of Connor, a brave little boy who courageously fought Krabbe disease. We want to fill the room. Get your tickets today for $110 here - events.handbid.com/lp/connors-kure-for-krabbe
#curekrabbe #krabbeconnect
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Breaking news - #krabbeconnect is eager to learn more. Thank you, Chiesi Group
www.globenewswire.com
Collaboration will leverage Key2Brain’s technology to develop blood-brain barrier-crossing enzymeA protein needed by the body to break down certain substances by causing a biochemical reaction within the cells. In Krabbe disease, galactocerebrosidase is the deficient enzyme. Words that end in replacement therapies for lysosomal storage disorders ...0 CommentsComment on Facebook
Did you know every state screens newborns differently for rare diseases like Krabbe disease? That’s why KrabbeConnect created easy-to-use NBS State Fact Sheets to help educate and advocate for the addition of Krabbe disease to a NBS panel.
At KrabbeConnect, we understand that it takes a village of advocates, partners, and pertinent scientific information to gain NBS approval for a new condition. Thus, we invite you to email us at info@krabbeconnect.org should you need assistance with your Newborn Screening efforts.
If you don’t find an NBS Fact Sheet for your state, it means we’re still waiting to hear a family story from that area. Please contact us at info@krabbeconnect.org if you’re willing to share your experience.
#curekrabbe #kdnbs #newbornscreening #krabbeconnect
Krabbe Disease Newborn Screening State-by-State Fact Sheets - KrabbeConnect
krabbeconnect.org
Contact us to see how you can help support the efforts in getting Krabbe added to your state's newborn screening panel: Info@krabbeconnect.org.0 CommentsComment on Facebook
Check it out! We have new sponsors helping ensure families can attend the 2025 Krabbe Family Warrior Meeting. Please help us thank Kevin Coupe, Lindsey Coupe, Kasey Feldt, and Alex Feldt for joining forces with #krabbeconnect to help make an impact on #KrabbeDisease. Both families fight in honor of their hero - Avery Coupe and Dawson Feldt.
Please note, details of this event will be emailed out this week to all registered attendees.
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*Sound on* It truly was a good day for the inaugural Swing for Saylor Golf Tournament to help #curekrabbe We raised over $23,000!
A BIG shout out to Matt Wales Media IG and his friend Ty for this wonderful video recap showcasing our outstanding sponsors - Rosenau Family Research Foundation Technology By Design Akin Hills Pet Hospital Matt Wales Media IG
WE CAN'T THANK OUR ATTENDEES AND SPONSORS ENOUGH!!!
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Is your loved one seen by Complex Care and Palliative CareSpecialized and supportive care for individuals with a serious illness with the goal of offering an improved quality of life, not only for the patient but the family as well.? If yes, check out the opportunity below. Qualified participants receive $100 upon completion.Is your child seen by both Complex Care and Palliative Care?
If so - that can be a great combo and we're glad it's available to you. And if so, please participate in this research study with one of our physician friends, Dr. Galen DiDomizio, Associate Professor of Pediatrics at UWisconsin, to provide feedback that will help pediatric providers understand how palliative care and complex care programs can work together to better serve the needs of children with medical complexity and their families. Participation in the study will include a short online survey that you can complete at any time, followed by an interview either over the telephone or Zoom at a time that is most convenient to you.
Qualified participants receive $100 upon completion.
Survey Link: bit.ly/4dFHkQF
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