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Krabbe Disease Heroes

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! Do you have a Hero you would like added to KrabbeConnect’s Our Hero page? Fill out and submit this form.

Alessandro G.

Roma Italia

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Alex T.

Eau Claire, WI

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Alexander L.

Morgantown, WV

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Angela A.

San Antonio, TX

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Angela D.

Comayagua, Honduras

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Angelita D.

Honduras

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Anna Rose J.

Bracknell, UK

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Anna T.

Beaver Dam, KY

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Anniston B.

Lafayette, LA

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Anthony C.

Brooklyn, NY

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Anthony M.

Wyandotte, MI

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Anthony S.

Millers Creek, NC

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Aron Eli O.

Reykjavik, Iceland

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Аrtёm D. -r.p.Sargatskoe Omskaja oblastʹ

Artëm D.

r.p.Sargatskoe Omskaja oblastʹ

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Ashley C.

Sun Prairie, WI

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Aubrey C.

Cuyahoga Falls, OH

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Avery C.

Warwick, RI

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Belle M.

Stillwater, MN

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Brittany W.

Radcliff, KY

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Bryan W.

Hodgenville, KY

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Bryce C.

Indianapolis, IN

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Cade H.

Calgary, AB

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Casey M.

Ireland

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Cassidy J.

Montevideo, MN

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Christopher S.

Metolius, OR

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Cloud K.

Bainbridge, GA

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Collin C.

Wisconsin Rapids, WI

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Dalton S.

Millers Creek, NC

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Damon James (DJ)

Havertown, PA  

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Daniel H.

San Jose, CA

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Darian H.

Humacao, Puerto Rico

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David Aaron

Garner, NC

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David B.

Akron, Ohio

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Dawson F.

Franklin, VA

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Delilah S.

Kent, UK

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Dennis M.Ø

Norway

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Duarte E.

Braga, Portugal

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Dylan M.

Washington, IL

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Elif, C.

Istanbul TURKEY  

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Emmalynn A.

Neon Ky  

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Emmett B.

Harrisburg, NC

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Emmett

Emmett K.

Clear Lake, SD

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Emmett M.

Beaverton, OR

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Evie Beth S.

North Yorkshire, UK

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Ezra B.

St. Louis, MO

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Gina R.

Cincinatti, OH

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Ginevra A.

Alessandria, Italy

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Giovanni M

Lakewood, Oh  

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Grayson M.

Boise, ID

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Grazia S.

Siracusa, Italy

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Hasan M.

Melrose, MA

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Hristo L.

Birmingham,UK

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Jace P.

Portland, M

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Jacksea T.

Grand Forks, ND

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Jackson G.

Lawrenceville, GA

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Jackson W.

Rhome, TX

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Jasper M.

Columbus, OH

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Jaxon S.

Galesburg, IL  

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Jayven R.

Bay St. Louis, MS

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Jeramie E.

Janesville, WI

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Jeremy T.

Eau Claire, WI

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Jyvhre S.

Jhyrve S.

Pittsburg, CA

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Jia K.

Seoul, Republic of Korea

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Jody V.

N. Liberty, IA

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Joshua B.

New Milford, PA

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Joshua C.

Cedar Rapids, IA

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Julia B.

Ann Arbor, MI

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Juni H.

Gothenburg, Sweden

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Kenan W.

Chicago, IL

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Kian and Luis K.

UK

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Kyran D.

Brisbane, Australia

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Lana S.

North Riverside, IL

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Laura C.

Cedar Rapids, IA

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Leandra F.

Indiana

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Lennon F.

Piketon, OH

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Levi P.

Ontario, Canada

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Liam H.

Chicago, IL

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Lucas N.

Pensacola, FL

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Mabry Kate W.

Powell, TX

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Makayla P.

Burnsville, MN

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Marcus G.

La Pryor, TX

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Marcus M.

Wyandotte, MI

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Maria E.

Barcelos, Portugal

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Mariah G.

La Pryor, TX

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Marshall W.

Dayton, OR

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Martin S.

Exeter, UK

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Matthew S.

Clare, MI

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Max B.

Phoenix, AZ

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McKenna T.

Modesto, CA

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Michael W.

Dayton, OR

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Mila L.

Southaven, MS

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Naomi H.

Simpsonville, SC

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Nassiah J.

Chicago, IL

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Nicholas B.

New Milford, PA

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Nick R.

Cincinnati, OH

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Nico B.

Rockford, Illinois Read Family Story

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Nikola G.

Newport News, VA

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Odin FW.

Johnson City, NY

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Oliver P.

Surrey, UK

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Owen W.

Powell, Tx

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Parker Janelle G.

Tempe, Arizona

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Patrick Surace

Svizzera

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Quinton N.

Des Plaines, IL

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Rebekah F.

Western Cape, South Africa

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Reesa S.

Scottsdale, AZ

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Regann, M.

Springfield, Mo

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Reuben, N

Dunedin, New Zealand

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Rocco W.

London, UK

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Roman R

Poole dorset, UK

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Rowan S

Nova Scotia, Canada

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Sakina M.

Dawsonville GA

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Sandrine SD.

Montreal, Canada

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Saylor S.

Richland MI

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Scarlett M.

Pikeville, TN

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Sophia S.

Kannapolis, NC

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Sophie T

Gateshead, UK  

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Sulaiman M.

Buford, GA

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Sunny H.

Bayside, CA

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Taiten B.

Eagle Mountain, UT

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Test A.

Westborough, MA Read Family Story

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Thomas H.

Ayden, NC

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Trevor L.

Baldwin City, KS

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Tygh D.

Puryear, TN

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Tymoteusz Mikołaj K.

Pław, Poland

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Victoria B.

Hershey, PA

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Vladimir D.

Comayagua, Honduras

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William B.

Davenport, IA

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Zander M.

Erie, PA

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KrabbeConnect
P.O. Box 264
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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.

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

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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.

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