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 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
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
Sweeten hearts and change lives! Join Krabbeconnect’s Year-Round See's Candies Drive. Your support will help satisfy sweet cravings and fuel research for those affected by Krabbe disease. Purposeful giving as you fulfill gifts to
-yourself
-family and friends
-coworkers
-teachers
Thank you for your continued help to #curekrabbe
See’s Candies to Help #curekrabbe - KrabbeConnect
krabbeconnect.org
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 wa...0 CommentsComment on Facebook
Did you know that animals significantly help children heal emotionally and physically from health conditions? That’s why we’re over-the-moon excited to welcome Akin Hills Pet Hospital as our first Silver sponsor!
Please help us thank Akins Hills Pet Hospital for helping us move our mission forward for #KrabbeDisease
Also, please like, follow, and share our Swing for Saylor event page here - www.facebook.com/share/1Aa2e7ypo5/
0 CommentsComment on Facebook
Happy Monday - don't forget to grab your spot today to save on registration. Get started today by clicking this link- bit.ly/4iNlV9R
We can't wait to embrace each family impacted by #krabbedisease
0 CommentsComment on Facebook
Take a look at Jasper’s inspiring story. Thanks to #newbornscreening, his life was saved after being diagnosed with Krabbe disease.
Today, Jasper is thriving and enjoys going to school. One of his favorite things is riding the bus! We encourage you to share his story with your state’s newborn screening advisory council and urge them to add #KrabbeDisease to the state screening panel.
0 CommentsComment on Facebook
A Tuesday friendly reminder!
Get started today by clicking this link- bit.ly/4iNlV9R
0 CommentsComment on Facebook
We invite you to share your voice! Akron Children's Hospital Leukodystrophy Clinic is conducting a survey on the financial burden of leukodystrophies. This survey is brief (15-20 min) and anonymous. The first 100 participants who take the survey will receive a token of appreciation.
Get started here today -
redcap.chmca.org/redcap/surveys/?s=9TTFLNA3A4H4CENF
0 CommentsComment on Facebook