Welcome to KrabbeConnect

KrabbeConnect seeks to revolutionize the practice of medicine by identifying, optimizing, and implementing advances in the care and cure of globoid cell leukodystrophyAnother name for Krabbe disease, a rare and usually fatal disorder of the nervous system., utilizing a multicenter network. Our goal is to achieve complete krabbe disease eradication through cooperation between patients, patient advocacy groups, clinicians, researchers, industry, and government. We are dedicated to the cooperative planning, implementation, analysis and reporting of controlled clinical trials, as well as observational studies and educational activities within the Krabbe community. KrabbeConnect is committed to pioneering a patient-centered care model and strengthening groundbreaking research by engaging the patients and caregivers with the Krabbe research community, to ensure the needs of Krabbe patients are being voiced.

Current & Upcoming Events

November 29, 2024

2024 Krabbe Family Holiday Grant Program

As the holiday season approaches, we understand that it can be a time of both joy and challenge for families affected by Krabbe disease. We believe in the power of community, support, and sharing love during this special time. We are excited for the third year of the “Krabbe Family Holiday Grant Program,” an initiative […] 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

Ongoing

KrabbeConnect Wine Collection

In October 2023, KrabbeConnect connected with Jennifer Tanner at Old York Cellars Winery to talk about how their group works to give back to philanthropic causes.  After a month of discussion and planning, Old York Cellars helped develop a unique collection of wines aimed to raise funds and awareness for Krabbe disease. Shop Online Now […] Read More