Connecting Patients and Research
Anna Rose J.
Beaver Dam, KY
Newport News, VA
May 15, 2018 Amy Simmonds
See Umbilical Cord Blood Transplant (UCBT).
P.O. Box 264
Rosemount, MN 55068-0264
A day in which each patient receives early diagnosis, state of the art care, and lives a life free of 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.
KrabbeConnect recognizes the financial hardships a rare disease can create. Often, patients and their families must travel to distant centers to obtain a comprehensive evaluation and expert care in Krabbe disease. Please consider a donation to help a patient living with Krabbe disease receive an evaluation or care at an approved comprehensive center.
Aid in the development of webinars, interactive videos, and pamphlets for primary care providers, because treating Krabbe disease is unique. Your donation here, will help educate the medical community on how to manage patients living with Krabbe disease.
Provide support to help patients and caregivers gain access to the latest research being done to improve the live of Krabbe patients. While no research has led to a “cure” for Krabbe disease, patients and their families want to know what’s being done to advance quality of life. Please consider a donation here to expand the KrabbeConnect Library.
Don’t have a preference on where your contribution lands, no problem. KrabbeConnect exists entirely as a volunteer organization so rest assured; your gift will be utilized to enhance the lives of Krabbe patients. Please consider a donation here, allowing KrabbeConnect to select the program or service that needs immediate attention.
Check this box to participate in one of our fundraisers. By selecting this box, KrabbeConnect will acknowledge your participation in one of our current events and funds will be used to develop programs and other resources for those affected by Krabbe disease.