Connecting Patients and Research
Being diagnosed with a rare disease is terrifying and difficult, yet, armed with the right information, KrabbeConnect hopes to make the journey slightly less stressful.
The information provided here is designed to help patients and caregivers understand what they can expect when a loved one is diagnosed with Krabbe disease. KrabbeConnect is committed to providing the necessary information to empower patients and caregivers to seek care that is right for them. In doing so, we have compiled helpful information you may need in an easy-to-read format that allows you to scan different sections at your own pace and quickly refer to specific content at any time.
Understanding the disease is an important first step. In this section you will learn how Krabbe disease is characterized, the incidence rate, and, fully understand the autosomal recessive inheritance pattern of the disease.
The most common form of Krabbe disease is Infantile Onset, usually beginning before the age of 1. In a relatively small number of cases, Krabbe disease does not appear until later in childhood, adolescence, or even adulthood, and, is classified as Late-Onset Krabbe. To learn more about the different forms and symptoms associated with the disease check-out Infantile\Late-Onset Krabbe disease.
The testing, treatment, and clinical care of a Krabbe patient is unique. Patients often face a long journey from diagnosis to treatment; thus, it’s KrabbeConnect’s goal to be transparent, providing the most current trends in treatment and care for Krabbe disease.
Krabbe disease is rare, affecting approximately 1 in every 100,000 births, yet, a disease does not feel “rare” when it affects you or a loved one. KrabbeConnect has partnered with the leading clinical experts in Krabbe disease and we want to connect with them. We encourage you to reach out to each expert to learn more about their clinical expertise in Krabbe disease.
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.