We are YOUR nonprofit supporting Ogden Syndrome.
Be the Expert!
Referring to the condition by at least one of its specific names and knowing just a pinch about genetics helps to spread the word about this ultra-rare syndrome. Ogden Syndrome and NAA10-Related Syndrome are BOTH appropriate names and can be used together or interchangeably. Ogden Syndrome is a genetic condition that is caused by an x-linked chromosomal abnormality. Feel free to print the PDF available under the “What is Ogden Syndrome?” tab and take it with you to appointments, school meetings, therapy sessions, or even gatherings with family and friends!
Raising awareness is key in the rare disease community. Use your social media accounts as a way to get the word out! When you post pictures of your Ogden kiddo(s), be sure to mention Ogden C.A.R.E.S. in your text, use the hashtags #ogdencares and #ogdensyndrome, and/or tag us @ogdencares.
Participating in Rare Disease days and weeks is a fun and fantastic way to get involved. One of the bigger ones is Rare Disease Day, which is held annually in February in partnership with NORD (National Organization for Rare Diseases). Another is Rare Disease Week on Capitol Hill, which is held annually from late February into early March by the EveryLife Foundation for Rare Diseases.
LOCAL CHAPTERS COMING SOON!
A great opportunity for involvement is starting up a local chapter of Ogden C.A.R.E.S. and leading the charge in your own community, city, or state. Please reach out if you’re interested in heading up a chapter in your area!
Not interested in starting a local chapter? You can still help!
Please share your great ideas – we would love to hear from you!