Krabbe Info & Resources

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Krabbe Disease

Krabbe Disease (crab-ay), also known as Globoid Cell Leukodystrophy, is a rare, genetic disorder affecting the central and peripheral nervous systems. Progression
of the disease is rapid and children born with the early infantile form typically die within the first few years of life. The only treatment currently available is an umbilical cord or bone marrow transplant.

 

Newborn Screening for Krabbe disease is only available in a few states, therefore diagnosis of the disease is usually made after children are symptomatic and not eligible for treatment.

For more information about Krabbe disease visit one of the foundations listed below.

 

Anne founded, Partners For Krabbe Research (P4KR) to support and advance research by funding and collaborating with scientists, researchers and clinicians. Anne also is the Co-Founder and Vice-President of KrabbeConnect,

a non-profit that bridges the gap between science and patient knowledge. 

 

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Partners For Krabbe Research (P4KR)
Anne Rugari, Founder and CEO
Partners For Krabbe Research (P4KR) is a 501(c)3 nonprofit foundation.  The mission is to increase awareness and to support research to improve the lives of
those born with Krabbe Disease. 
www.krabbes.org

 

KrabbeConnect
Anne Rugari Co-Founder and Vice-President
KrabbeConnect's mission is to be the source of comprehensive information and access to resources for patients with Krabbe disease.

The foundation will drive state of the art research by bridging the gap between science and patient knowledge. 
www.krabbeconnect.org

 

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Florida Rare Action Network, National Organization of Rare Disorders
(NORD)
Co-Ambassador State of Florida
Anne is a volunteer for the Florida Rare Action and serves as the Co-Ambassador
in the State of Florida. The mission NORD’s Rare Action Network ®  (RAN) is to
connect and empower a unified network of individuals and organizations with
tools, training, and resources to become effective advocates for rare diseases
through national and state based initiatives across the United States.

https://rareaction.org/resources-for-advocates/state-profiles/florida/

 

Engage Health: Rare Disease Difference Maker
Awarded to Anne Rugari in 2019
https://www.engagehealth.com/rare-disease-difference-maker/

 

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