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
      • Krabbe Newborn Screening Info and Map
      • Experts in Krabbe Newborn Screening
      • Leukodystrophy Newborn Screening
  • Research, Studies & Trials
    • Research, Studies, Trials
      • Experts in Research
      • Science Spotlight
      • Brain and Tissue Banking
    • KrabbeConnect Research
      • Presentations/Publications
      • KC Speaking Engagements
    • 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
      

KrabbeConnect seeks to revolutionize the practice of medicine by identifying, optimizing, and implementing advances in the care and cure of globoid cell leukodystrophy, utilizing a multicenter network. Our goal is to achieve complete disease eradication through cooperation between patients, patient advocacy groups, clinicians, researchers, industry, and government. We are dedicated to the cooperative planning, implementation, analysis and reporting of controlled clinical trials, as well as observational studies and educational activities within the Krabbe community. KrabbeConnect is committed to pioneering a patient-centered care model and strengthening groundbreaking research by engaging the patients and caregivers with the Krabbe research community, to ensure the needs of Krabbe patients are being voiced.

Our Heroes

Ginevra, A

Ginevra A.

Mariah-G-La Pryor-TX

Mariah G.

Marcus-G-La Pryor-TX

Marcus G.

Evie-Beth-S-North-Yorkshire-UK

Evie Beth S.

Lennon F

Lennon F.

Brittany-W-Radcliff-KY

Brittany W.

KC Hero Cade Huitema

Cade H.

KC Hero Duarte Enes

Duarte E.

Zander, M

Zander M.

Max B

Max B.

Anthony S

Anthony S.

DylanM-WashingtonIllinois

Dylan M.

darianH_puertoRico

Darian H.

christopherS_OR

Christopher S.

MariaE-BarcelosPortugal

Maria E.

Jeremy Thoms

Jeremy T.

MilaL-SouthavenMS

Mila L.

KC Hero Laura Cross

Laura C.

victoriaB_HersheyPA

Victoria B.

Rowan S

Rowan S

Kenan-S

Kenan W.

Kryan D - Brisbane Australia

Kyran D.

Emilia M

Aron Eli O.

Aubrey-C-Cuyahoga Falls-OH

Aubrey C.

JoshuaB-NewMilfordPA

Joshua B.

Anna T - Beaver Dam, KY

Anna T.

Hasan-M

Hasan M.

Sandrine-SD-Montreal-Canada. JPG

Sandrine SD.

cloudK_Georgia

Cloud K.

Jayven-R-Bay St Louis-MS

Jayven R.

Angela-D-Comayagua-Honduras

Angela D.

Аrtёm D. -r.p.Sargatskoe Omskaja oblastʹ

Artëm D.

AngelaA-sanAntonioTX

Angela A.

TyghD_PuryearTN

Tygh D.

Reesa-Stutzman

Reesa S.

BryceC-Indianapolis

Bryce C.

Mabry Kate W

Mabry Kate W.

Our Hero Liam Hammonds

Liam H.

Dalton S

Dalton S.

ezraB_stLouisMO

Ezra B.

TymoteuszMikolajK_poland

Tymoteusz Mikołaj K.

Sophia, S

Sophia S.

Nassiah-J-Chicago-IL

Nassiah J.

Ashley-C

Ashley C.

KC Hero Rocco Windsor

Rocco W.

LeviP-OntarioCanada

Levi P.

Makayla-P

Makayla P.

davidB_akronOhio

David B.

CollinC-WisconsinRapidsWI

Collin C.

KC Hero Lucas Betz

Lucas N.

JuniH-Sweden

Juni H.

Anna Rose J

Anna Rose J.

Alex Thoms

Alex T.

KC Hero Joshua Cross

Joshua C.

Nick-R

Nick R.

RebekahF-SouthAfrica

Rebekah F.

OdinFW-NY

Odin FW.

Jeramie-E-Janesville-WI. JPG

Jeramie E.

williamB_IA

William B.

Emmett B Harrisburg NC

Emmett B.

Kc Hero Lana Shelton

Lana S.

Vladimir-D-Comayagua-Honduras

Vladimir D.

Trevor

Trevor L.

Sunny H Bayside CA

Sunny H.

kian_luis_UK

Kian and Luis K.

Nikola-G-Newport News-VA

Nikola G.

AveryC-WarwickRI

Avery C.

Gina-R

Gina R.

Naomi H

Naomi H.

Quinton-N-Des Plaines-IL

Quinton N.

Owen W

Owen W.

Our Hero Jackson Garcia-1

Jackson G.

oliverP_UK

Oliver P.

Dawson-F-Franklin-VA

Dawson F.

Grayson-M-Boise-Idaho

Grayson M.

KC Hero Alessandro Menditto

Alessandro G.

delilahS_Kent

Delilah S.

AngelitaD-Honduras

Angelita D.

Jasper-M-Columbus-OH

Jasper M.

jodyV_NLibertyIA.jpg

Jody V.

nicholasB-NewMilfordPA

Nicholas B.

Julia-B

Julia B.

Bryan-W-Hodgenville-KY

Bryan W.

Matthew-S

Matthew S.

Leandra Fry

Leandra F.

Anthony C

Anthony C.

Taiten-B-Eagle Mountain-UT

Taiten B.

CassidyJ-MontevideoMN

Cassidy J.

Martin, S

Martin S.

jackseaT_grandForksND

Jacksea T.

emmettM_OR

Emmett M.

ThomasH-AydenNC

Thomas H.

KC Hero Marshall Wilson

Marshall W.

caseyM_ireland

Casey M.

KC Hero Michael Wilson

Michael W.

Jackson W

Jackson W.

annistonB_lafayetteLA

Anniston B.

parkerJanelleG_tempeAZ

Parker Janelle G.

We are working towards 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. Help us celebrate all of the Krabbe disease Heroes and join the fight to #curekrabbe!

Submit Your Hero
See All Krabbe Heroes

What is Krabbe Disease?

Krabbe disease (pronounced krab A), is a rare genetic disorder, also known as globoid cell leukodystrophy. Krabbe disease is described as a severe neurological condition that results from the loss of the protective covering (myelin sheath) surrounding nerve cells. This protective sheath is essential to insulate the nerves and ensure the rapid transmission of nerve signals throughout the body.

Learn More

#curekrabbe News

Do you want to follow our journey, be notified of important news, or simply want to learn about research efforts to help #curekrabbe?  Join our hassle free mailing list now.  At KrabbeConnect, we have no intentions of overwhelming your inbox.  In fact, we guarantee you will receive less than 4 emails per month from our organization.  We just want you to be "in the know."  Sign up today!

Join Our Mailing List

Upcoming Events

See what events and fundraisers we have currently going on! Join KrabbeConnect in helping to make a difference in the lives of those affected by Krabbe disease.

 

April 12, 2021 - LISTEN AND LEARN WEBINAR: Partner with Us Program: How to Set Your Own Fund

May 13, 2021 - LISTEN AND LEARN WEBINAR: Caring for the Caregivers: Sensory Self-Care in Micro-Moments a Day

September 24, 2021 - SAVE THE DATE: A Million Dreams Gala 2021

Learn More
Together - Spotify - KrabbeConnect

KrabbeConnect Sponsors

Say hello to

Home

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