Connecting Patients and Research
KrabbeConnect seeks to revolutionize the practice of medicine by identifying, optimizing, and implementing advances in the care and cure of globoid cell leukodystrophy, utilizing a multicenter network. Our goal is to achieve complete 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.
Say hello to
Grayson M.
Boise, ID
Krabbe disease (pronounced krab A), is a rare genetic disorder, also known as globoid cell leukodystrophy. Krabbe disease is described as a severe neurological condition that results from the loss of the protective covering (myelin sheath) surrounding nerve cells. This protective sheath is essential to insulate the nerves and ensure the rapid transmission of nerve signals throughout the body.
Do you want to tell your Krabbe disease story to the FDA? Register to speak and/or attend the upcoming Externally-Led Patient Focused Drug Development (EL-PFDD) meeting, Thursday, October 29th, 2020. Your participation will help drug developers, the FDA, and many others understand the specific unmet needs of Krabbe disease and the severe impact on one’s daily life.
See what events and fundraisers we have currently going on! Join KrabbeConnect in helping to make a difference in the lives of those affected by Krabbe disease.
October 10, 2020 - A Million Dreams Gala
October 29, 2020 - Patient Focused Drug Development Meeting
Ongoing Awareness Campaign - Krabbe Cookie Challenge
KrabbeConnect
P.O. Box 264
Rosemount, MN 55068-0264
(651) 252-4117
Info@KrabbeConnect.org
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.
Currently Krabbe disease is not automatically screened for in the state of Pennsylvania. Parents must request or “Opt-In” to have Krabbe added to the newborn screening tests done at birth.
