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!

Latest Information

It’s time again for our all inclusive, virtual fundraiser for Ogden Syndrome! Last year with the support of our community around the World we were able to smash our goal of $25,000 and went on to raise over $45,000 for Ogden Syndrome research!

This year we are shooting for the stars with an ambitious goal of $50,000 to get us one step closer to a treatment option for Ogden Syndrome!!!

It’s as Easy as 1,2,3!

1) From now until October 10th Create or Join a Team to support! You can see Teams that have already been created on a leaderboard at the bottom of the linked page!

2) Promote and encourage others to participate and give!

3) Walk, Run or Roll 10 Laps around the Track nearest you anytime between October 1st and October 10th 2026 in honor of Ogden Syndrome! Be sure to use tag Ogden CARES in your photos so we can follow along on your unique Walk ‘n’ Roll!

Together we can make a huge difference!

Ogden C.A.R.E.S. joins Rarebase

Ogden C.A.R.E.S. has officially partnered with Rarebase in an effort to identify an already FDA-approved medication that will benefit our loved ones living with Ogden Syndrome!

To be taking the first pre-clinical steps on the hunt for a treatment option for this community is a dream come true, and it took a lot of hard work and a collective effort to get here. We are especially grateful to Jody Smith, President and Owner of CornerStone Staffing, for her extremely generous donations, without which this dream would still be years away.

Spotlight Series

Ezequiel

My name is Michelle, and I am the mother of little Ezequiel, my precious little boy from Botucatu, São Paulo, Brazil. Our family also includes his older siblings, Agatha and Arthur.

Ezequiel’s story began during my pregnancy. During a prenatal ultrasound, an increased nuchal translucency was detected, raising concerns about

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