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Rare Genomes Project

August 8, 2023/by Christine Kelly

This is the Rare Genomes Project logo. To the left is a small orange r that flows into a blue g. Lowercase text reading rare is in orange to the right while blue text reads genomes project below it.As part of our collaboration with CZI through the Rare as One Network, suspected Lafora disease patients and their families in the U.S. have access to genetic testing through the Rare Genomes Project.

Rare Genomes Project Offers Free Genetic Testing for Rare Disease Families in the U.S.

We know you have likely already experienced a confirmed Lafora disease diagnosis for one of your loved ones or patients. However, please feel free to share this resource with those who might be in need of genetic testing. The diagnostic odyssey for rare disease patients is too long and we are grateful this program will help reduce it.

“The Rare Genomes Project…at the Broad Institute of MIT and Harvard is a patient-driven research study led by genomics experts and clinicians who believe that the latest advances in genomic sequencing are changing medicine and should be accessible to families with rare and undiagnosed conditions.” 

We encourage you to view their brochure and flyer! You can find out more information about eligibility and apply for testing on their website.

Website Request brochure View flyer
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https://chelseashope.org/wp-content/uploads/2023/08/Featured-Images.png 628 1200 Christine Kelly https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png Christine Kelly2023-08-08 09:33:232023-08-08 10:30:04Rare Genomes Project

About Chelsea’s Hope

Chelsea’s Hope began as a website in the fall of 2007 to share Chelsea Gerber’s story with family and friends. A 501(c)(3) organization since 2009, we have made an impact by raising awareness, connecting families worldwide, funding research, and maintaining hope.

Our mission is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments. [Read More]

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The mission of Chelsea’s Hope is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments.

Chelsea’s Hope Lafora Children Research Fund is an IRS 501(c)3 nonprofit organization. EIN: 27-1008382

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Use ICD-10 code G40.C for Lafora.

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