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 27, 2026
2026 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 […] Read More
Sunday, August 23, 2026
2026 BrAvery for Avery Golf Tournament
Come swing a club and make a difference at the 6th Annual BrAvery for Avery Golf Tournament at Valley Country Club in Warwick, RI — a day of golf, community, and hope as we honor Avery’s legacy and help #curekrabbe. This special event honors the life and legacy of Avery Coupe while raising funds to […] Read More
Saturday, September 26, 2026
Tygh’s Strides to #curekrabbe 5K
Lace up, show up, and help us take meaningful strides toward a cure for Krabbe disease! Join us for Tygh’s Strides to #curekrabbe, a family-friendly 5K event bringing our community together to raise awareness, inspire hope, and support families impacted by Krabbe disease. Event Activities Enjoy a fun-filled morning for all ages featuring: Become a […] Read More
⏰ T-16 Days Until We Gather!
The countdown is on, and we can't wait to bring the Krabbe community together for this year's Family Warrior Meet-Up!
A heartfelt thank you to our second meeting sponsor, Rosenau Family Research Foundation, for their incredible commitment to families affected by Krabbe disease. Through significant investments in research, they are helping fuel the scientific discoveries that will pave the way for better treatments and, ultimately, a cure. Their partnership continues to make a meaningful difference for our community.
To everyone who has registered—we're thrilled to share that this year's meeting is officially at capacity! We have an amazing group of families joining us, and we know it will be an impactful day of learning, connection, and hope.
📧 Registered attendees: Keep an eye on your inbox next week! We'll be sending a detailed information packet with everything you need to know before you arrive. Our team is putting the finishing touches on all the logistics to ensure a wonderful experience for every family.
See you in just 16 days—we're looking forward to making this gathering one to remember! 💙🧡 #curekrabbe #krabbeconnect
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Happy Wednesday! ICYMI - don’t forget to register. 💙💙 Adult Krabbe Disease Support Group 💙
You are not alone.
Join us for a virtual support group designed for those diagnosed with juvenile and adult Krabbe disease. This is a safe space to connect with others who understand the unique challenges of Krabbe disease, share experiences, ask questions, and find support.
Whether you're newly diagnosed or have been navigating this journey for years, we invite you to join the conversation.
📍 Virtual via Zoom
🤝 Connection • Support • Community
Must be 18+ to register. Register here - us02web.zoom.us/meeting/register/5nXmE850TnOOKsk6vrTrjQ
Together, we are stronger. 💙
#krabbeconnect #RareDiseaseCommunity #curekrabbe
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At KrabbeConnect, everything we do is guided by three core pillars:
🧡 Amplify the voices of patients and families affected by Krabbe disease.
🔬 Help fill critical gaps in research by advancing knowledge and understanding.
📚 Provide trusted information, resources, and support throughout every stage of the journey.
Together, we're connecting patients, families, clinicians, and researchers to create a stronger future for the Krabbe community.
Because every story matters. Every question deserves an answer. Every family deserves support.
#KrabbeConnect #CureKrabbe #RareDisease #PatientAdvocacy #RareDiseaseResearch #ConnectingPatientsAndResearch
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Michelle and Bre not only completed the competition in 1 hour and 23 minutes, but they also raised nearly $6,000 for KrabbeConnect! 🎉
The names written on their arms sparked conversations throughout the event, creating opportunities to share the stories of our Krabbe warriors and angels. Because of their efforts, more people learned about Krabbe disease, more awareness was raised, and new supporters stepped forward to help.
Thank you, Michelle and Bre, for turning every step, every challenge, and every conversation into hope for the Krabbe community.
Copy link to get apparel - krabbeconnect.org/kcevent/hybrid-for-hope/
💙 #hybridforhope #curekrabbe #krabbeconnect
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MIchelle and Bre not only completed the competition in 1 hour and 23 minutes, but they also raised nearly $6,000 for KrabbeConnect! 🎉
The names written on their arms sparked conversations throughout the event, creating opportunities to share the stories of our Krabbe warriors and angels. Because of their efforts, more people learned about Krabbe disease, more awareness was raised, and new supporters stepped forward to help.
Thank you, Michelle and Bre, for turning every step, every challenge, and every conversation into hope for the Krabbe community.
Click link to get apparel - krabbeconnect.org/kcevent/hybrid-for-hope/
💙 #hybridforhope #curekrabbe #krabbeconnect
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💙 Juvenile and Adult-Onset Krabbe Disease Matter, Too 💙
While infantile and late-infantile Krabbe disease are more commonly recognized, individuals living with juvenile and adult-onset Krabbe disease are an important part of our community and deserve support, understanding, and access to resources.
Because symptoms often develop gradually and can resemble other neurological conditions, many individuals experience a long and challenging diagnostic journey before receiving the correct diagnosis.
If you or someone you know has juvenile or adult-onset Krabbe disease, please know that you are not alone.
KrabbeConnect offers resources, education, support, and opportunities to connect with others who understand the journey.
📧 Reach out to us at info@krabbeconnect.org to learn more about available resources and support.
Together, we can ensure every individual affected by Krabbe disease feels seen, heard, and supported. 💙
#krabbeconnect #KrabbeDisease #raredisease #adultkrabbe #juvenilekrabbe #youarenotalone
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