One of the best ways to support the Ogden Syndrome community is by raising awareness. Because this syndrome is so rare, it can be hard to get the help and support we need. The more people who know about it, specifically in the medical community, the better our chances are of getting the support we need.
Raising awareness is easy! You can:
– Participate in Rare Disease days and weeks – some of the bigger ones are Rare Disease Day, which is held annually in February, in partnership with NORD (National Organization for Rare Diseases); and Rare Disease Week on Capitol Hill, which is held by the EveryLife Foundation for Rare Diseases and will be February 22 – March 3, 2022.
– Talk to your doctors and therapists using the specific name(s) of the syndrome, both Ogden Syndrome and NAA10-related Syndrome.
– Use your social media accounts as a way to get the word out there. When you post pictures of your special needs child, be sure to mention Ogden Syndrome in your text, use hashtag #ogdensyndrome, and/or tag us!
How You Can Help
Our Board of Directors is working hard to support the Ogden Syndrome and rare disease communities, but we cannot do it alone. If you have ideas for ways that we can help, grants we should be applying for, contacts we should make, fundraisers we should organize, etc., please reach out via our Contact Us page. We would love to hear from you!
Donations and Fundraising
The Ogden Syndrome Foundation US has been approved for 501(c)(3) status with the IRS. This means that we are operating as a non-profit organization. This status has an impact on our fundraising both for us and for anyone who is interested in donating or participating in our fundraising efforts.