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
      • Krabbe Clinical Trials
      • Brain and Tissue Banking
    • KrabbeConnect Research
      • Posters
      • Abstracts
  • Get Involved
    • #curekrabbe Projects
      • KrabbeCURES
    • Events
      • Current 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
      

Research, Studies, and Trials

Every day, with our vision, KrabbeConnect will support the families, caregivers, and most importantly, the patients affected by Krabbe disease, by bridging the gap between science and patient knowledge.

According to the National Center for Advancing Translational Sciences (NCATS), research development faces many hurdles; the complexity in diagnosing rare diseases, widely dispersed patients and scientific experts, and high economic risk in developing a therapy that would serve a relatively small number of patients.

At KrabbeConnect, we will breakdown these research hurdles by bringing patients to the forefront of science.  In this section, we equip you with the experts in Krabbe research, share scientific advances, and act as an intermediary for clinical trials.  KrabbeConnect won’t focus on the rarity of the disease instead, we will focus on creating a cohesive network that will quickly resolve major challenges, enhance disease management, and build a portfolio of viable therapies.

Experts in Research

Research is progressing and here’s where you can learn more about the remarkable people and their dedicated efforts to bring a viable treatment to the bedside for Krabbe disease.

Learn More

Science Spotlight

Want to have the inside scoop on Krabbe disease?  In this section, we introduce new advances in research, highlight current projects, showcase emerging researchers, and provide insights on recent progress in Krabbe disease.

Did you know that an organization called, The Legacy of Angels Foundation, is hosting the 9th Krabbe Translational Research Network meeting in March?  We spotlight this organization's important work in Krabbe disease.

Coming Soon

Krabbe Clinical Trials

January 5th, 2021, Forge Biologics announces the FDA approved clinical named, Gene Transfer Clinical Trial for Krabbe Disease (RESKUE).  This study utilizes a combination therapy (HSCT and AAVrh10) to improve the outcomes of patients recently diagnosed.  This is the first gene therapy clinical trail approved by the FDA for Krabbe disease. 

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