Managing a rare disease is not easy. There are unique challenges and opportunities that require decision on where to obtain care, end-of-life preparation, newborn screening and so much more. We hope you find these resources to be educational, valuable, and most importantly useful.
KrabbeConnect is dedicated to bringing you effective resources to assist in planning, coping, and making difficult decisions. It’s our goal to empower families and clinicians impacted by Krabbe disease with the information listed below, to assist with the whole scope of this disease.
- Transplant 101-the “ins and outs” of cord blood transplants
- Newborn Screening (NBS)-learn about newborn screening for Krabbe disease and if your state is currently screening.
- Brain and Tissue Bank Donations-addresses donating an individual’s brain and tissues to advance research of this neurological disease.
- KD Research Library-published journal articles amended into easy-to-understand language.
- Clinical Trials-what you need to know before enrolling
Other Resources Coming Soon
- Importance of being your own healthcare advocate
- End-of-life preparation
- Ensuring academic success for your disabled child
If you don’t see a topic here you would like information on, we would like to hear from you!