KrabbeCURES

Frequently Asked Questions

Thank you for your interest in KrabbeCURES. For a full list of frequently asked questions, click here. If you have additional questions that are not listed below or in this document, please contact us at info@krabbeconnect.org!

What is the purpose of the KrabbeCURES?

The purpose of the KrabbeCURES is to bring the Krabbe disease community together and collect data.

Some of the goals of the KrabbeCURES are:

• To characterize and describe the Krabbe disease population as a whole and to gain a better understanding of the spectrum of clinical variants in individuals with Krabbe disease of all stages.  This includes but is not limited to collecting information on:  diagnosis, treatment, medical history, socio-economic environment, and outcomes.
• To understand the changes of Krabbe disease over a lifetime as well as to gain information on clinical practice patterns and variations over the course of treatment.
• To facilitate the development of best practice and management guidelines and recommendations to optimize care, improve quality of life and outcomes, and standards of care.
• To provide information regarding ongoing research studies and clinical trials. Study Participants may consent to be contacted by researchers for recruitment into Institutional Review Board (IRB) approved studies.
• To understand gaps in insurance coverage for the care of individuals with Krabbe disease

Who is KrabbeConnect?

KrabbeConnect bridges science and patient knowledge to improve care and find a cure.  Our goal is to reach 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.  Our core values are compassion, collaboration, advocacy, innovation, and transparency.