Yesterday was GivingTuesday. Thanks to the generosity of so many people, we received donations totaling more than $4,400! If Facebook is able to match our FB contributions, we will receive $2,000 more.

We are amazed and grateful at the support we received and will use these funds to continue our fight for a better future for our community.

GivingTuesday may have passed, but for a fully volunteer organization as small as ours, every dollar makes a true difference.

All donations made to the Ogden Syndrome Foundation are tax-deductible.

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CZI announces Rare as One Project award recipients!

Chan Zuckerberg Institute’s (CZI) Rare as One (RAO) project has selected the Ogden Syndrome Foundation as a recipient for a general operating support award!

We are thrilled to be recognized for the important work we are doing in the rare disease space and in support of the rare disease community. We look forward to a continuing relationship with CZI and forging new relationships on our path to building a collaborative research network.

You can read more about RAO and view the list of grant and award recipients here.

News and Events

RARE-X

Along with leaders from our global patient organization, NAA10 Families Together, we’ve been working with RARE-X as a pilot group to help launch their patient-owned data collection platform (DCP). The Ogden DCP launched on August 10, 2021. Check out the RARE-X website to learn more about the incredible and important work they are doing for the rare disease community.

~Spotlight on Kamilla~

Click the Photo to learn more about this sweet and smiley Texas girl!