Ogden C.A.R.E.S.!

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We are a nonprofit organization providing Community, Advocacy, Research, Education, and Support for Ogden Syndrome.

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Ogden Syndrome and Genetic Facts

Our bodies are made up of cells. Within each cell is a nucleus. Within each nucleus there are 23 pairs of chromosomes (you get one from mom and one from dad!).
Ogden Syndrome is caused by a single spelling error on the crucial NAA10 gene.
Ogden Syndrome is Ultra Rare! So rare in fact the odds of diagnosis are 1/11 MILLION
The NAA10 gene is located on the X chromosome at position Xq28.
The NAA10 protein is made and generally remains in the cytosol.
The entire NAA10 gene is almost 6000 nucleotide bases long!
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Latest Information

RARE-X Enrollment Party

Ogden Families – you’re invited to the RARE-X ENROLLMENT PARTY!

Friday, January 27th, 11am Eastern

Please register to attend by clicking here.
View Event Information >

Spotlight Series

Brinley

Brinley is 4 years old and lives in Texas with her parents, Todd and Kelly; her older sister, Jayla; and her twin brother, Wesley.

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Kamilla

Kamilla

Kamilla is 7 years old and lives in Texas with her parents, Stefanie and Johnny, and her sisters, Kinzley and Evelyn.

Read Story
Amelia

Millie

Amelia (Millie) is 2 years old and lives in Washington State with her parents, Nikki and Gerrad, and her baby brother, Calvin.

Read Story

A Global View of Ogden Syndrome

World Map
  • Brazil - 5
  • United States - 38
  • Norway - 1
  • Spain - 1
  • UK - 14
  • Australia - 1
  • Canada - 8
  • Colombia - 1
  • Denmark - 2
  • Holland - 4
  • Serbia - 1
  • Germany - 5
  • France - 9
  • Ireland - 2
  • China - 2
  • India - 1
  • Israel - 1
  • Poland - 2
  • Jordan - 1
  • Finland - 1
  • Dominican Republic - 1