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!
RARE-X Enrollment Party
Ogden Families – you’re invited to the RARE-X ENROLLMENT PARTY!
Friday, January 27th, 11am Eastern