~~ a Foundation providing Community, Advocacy, Research, Education, and Support for Ogden Syndrome ~~

News & Events

Global Genes and RARE-X are merging!

"Global Genes and RARE-X have come together around a shared vision of empowering the next generation of advocates to drive progress within and across rare diseases. The combined organization will provide rare disease advocates with a continuum of services, resources, and connections to accelerate the path from initial support and awareness through diagnosis, drug development, and access to treatments, using a collaborative approach that involves biopharma, clinicians, researchers, and funders, with data as a central core" (shared vision statement provided by Global Genes and RARE-X).

If you're not familiar with Global Genes, check them out!

They are an amazing resource for the rare disease community.

If you're part of our Ogden Syndrome community and haven't yet registered with RARE-X, please do so now! We are building a patient-owned data collection platform that will help us learn about the big picture of Ogden Syndrome and, hopefully, pique the interest of researchers and/or create connections to similar rare diseases.

You can access our RARE-X patient page here.

If you've already registered, be sure to log in periodically to update your information or complete any newly available surveys.

Spotlight Series

Meet Brinley!

Click the photo to learn more about

this little cutie-patootie from Texas!

Ogden Syndrome: a global view