KrabbeConnect

Connecting Patients and Research

Drive research forward! Sign up for KrabbeCURES
Menu
  • Krabbe Disease
    • Newly Diagnosed
      • * Treatment and Resource Maps *
      • Understanding Krabbe Disease
      • Infantile / Late-Onset
      • Diagnosis, Treatment and Clinical Care
      • Transplant 101
    • Patients & Caregivers
      • Connect with a Clinical Expert
      • Genetic Counselor/Care Team Knowledge
      • Advocating for Your Patient
      • Connect with Kevin
    • Newborn Screening
  • Research, Studies & Trials
    • Research, Studies, Trials
      • Experts in Research
      • Science Spotlight
      • Brain and Tissue Banking
    • KrabbeConnect Research
      • Posters
      • Abstracts
    • Krabbe Clinical Trials
      • Current Clinical Trials
      • Resources for Clinical Trials
      • Press Releases
  • Get Involved
    • #curekrabbe Projects
      • KrabbeCURES
    • Events
      • Current/Upcoming Events
      • Ongoing Awareness Campaigns
      • Past Events
    • Community Engagement
      • Our Heroes
      • Partner with Us-Family Advised Fund
  • Education
    • Listen and Learn Webinars
    • KrabbeConnect Library
    • Glossary of Terms
  • #curekrabbe Shop
  • Donate
  • About Us
    • About KrabbeConnect
      • Mission & Vision
      • Board Members
      • Scientific Advisory Council
    • Other Information
      • Our Affiliations
      • Bylaws & IRS Forms
      • Contact Us
      

KrabbeCURES

KrabbeCURES updated landing page

Be the first to make a difference.  Sign up today to be a part of KrabbeCURES.

Join the initiative at krabbecures.iamrare.org

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 leukodystrophy (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 leukodystrophy 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.

Join the initiative at krabbecures.iamrare.org

For further information, please contact: nordregistry@rarediseases.org

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 

Ryan and Laura Family Pic

Become a Partner

Are you looking to help make a difference for patients and families living with Krabbe disease?  KrabbeConnect wants to collaborate with you! LEARN MORE

Join Our Mailing List

  • This field is for validation purposes and should be left unchanged.

Contact Us

KrabbeConnect
P.O. Box 264
Rosemount, MN 55068-0264

(651) 252-4117
Info@KrabbeConnect.org

OUR VISION

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.

Newly Diagnosed

  • Treatment and Resource Maps
  • Understanding Krabbe Disease
  • Infantile / Late-Onset
  • Testing, Treatment and Clinical Care
  • Transplant for Krabbe Disease Therapy

Patients & Caregivers

  • Connect with a Clinical Expert
  • Genetic Counselor/Care Team Knowledge
  • Advocating for Your Patient
  • Connect with Kevin

Research & Education

  • Research, Studies & Trials
  • Clinical Trial
  • Brain and Tissue Bank
  • Listen and Learn Webinars
  • KrabbeConnect Library
©2021 KrabbeConnect. All Rights Reserved. Website by Rokkit Marketing.
Privacy Policy | Terms & Conditions

Copyright © 2021 · Genesis Framework · WordPress · Log in

Pennsylvania (Opt-In)

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.

Make a Donation