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

Who are we?

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

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!

Xcelerate RARE is coming soon!

What does this mean for Ogden CARES and our patient community? We’ve got some work to do! We need to collect as much data as possible to make Ogden Syndrome a prime candidate for this research opportunity.

Families – stay up-to-date on our weekly RARE-X challenges and raffle drawings on both the Ogden Syndrome-NAA10 Family Support Group and the NAA10 Families Together pages on Facebook.

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