Make a Difference!
Participate in the KrabbeCURES Engagement Study by clicking the button below.
Krabbe Community United Research and Engagement Study (KrabbeCURES)
KrabbeCURES, a collaborative effort between KrabbeConnect and the National Organization for Rare Disorders (NORD), to study globoid cell leukodystrophyAnother name for Krabbe disease, a rare and usually fatal disorder of the nervous system. (Krabbe disease). KrabbeCURES supports research on Krabbe disease and how it progresses over time.
Overview of Research Study
KrabbeCURES is more than a versatile online system that securely collects and stores data for medical research; it is a dynamic participant-driven resource that can empower and unite the globoid cell leukodystrophyThe leukodystrophies comprise a group of progressive, genetic disorders mainly affecting the central nervous system (CNS). Most leukodystophies result from a disruption of the growth of the myelin sh community through shared knowledge. Study participants not only can complete surveys about their own disease experiences, but also can learn about other participants’ experiences by viewing aggregated survey data. As the study sponsor, KrabbeConnect, will ensure that data privacy and confidentiality are strictly maintained. Participation in the KrabbeCURES is free and voluntary, and participants may withdraw at any time.
Community Involvement
KrabbeCURES is a powerful opportunity for individuals with Krabbe disease and their family members to contribute directly to research that will enhance our understanding of Krabbe disease, thus facilitating the development of new diagnostic and treatment options. Participation is especially vital given the rarity of Krabbe disease. Every patient’s experience is a unique and invaluable part of the natural history of the disease.
For further information, please contact: nordregistry@rarediseases.org
Advancing Research Through the Krabbe Community United Research and Engagement Study (KrabbeCURES)
Original Record Date: December 15, 2020
Join us for a 1-hour discussion with The National Organization for Rare Disorders and KrabbeConnect on KrabbeCURES, a new tool to help fill gaps in research on study globoid cell leukodystrophy (Krabbe disease). KrabbeCURES is a versatile online system that securely collects and stores data for medical research. It is a dynamic participant-driven resource that can empower and unite the globoid cell leukodystrophy community through shared knowledge. We want all Krabbe disease stakeholders (patients, caregivers, clinicians, researchers, industry, etc.) to understand this new tool and how it will help us #curekrabbe.
About NORD
NORD, a 501(c)(3) organization, is the leading patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. For more information, visit NORD.
KrabbeCURES SPONSORS
KrabbeConnect would like to recognize Ryan and Laura Nitahara, advisors of Quinton’s Quest for a Cure Fund (QQCF), for their financial support to launch KrabbeCURES. KrabbeCURES came to fruition because of the generous support from QQCF. The Nithara family utilized KrabbeConnect’s “Partner with US” program to develop a fund to help advance research in Krabbe disease in honor of their son, Quinton, who was diagnosed with Late-Onset Krabbe disease at birth.
Are you interested in becoming a KrabbeCURES SPONOR? Email us at info@krabbeconnect.org
