March 20, 2026

2026 Putt-Putt to #CureKrabbe

Join us for a fun evening of miniature golf while giving back to families impacted by Krabbe disease! Putt-Putt to #CureKrabbe brings together community members, professionals, and advocates for friendly competition, connection, and purpose. Why This Event Matters Funds raised through Putt-Putt to #CureKrabbe directly support individuals and families navigating Krabbe disease by: Your participation […] Read More

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

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