Ogden C.A.R.E.S. exists to support our families.
A diagnosis of Ogden Syndrome can feel like both a blessing and a curse - having a name for the issues and struggles you've already faced can feel like a weight has been lifted, but it's also a clear indication that there is no cure, no fix, no solution...yet.
While our journeys are unique, the commonality of our children sharing the same genetic syndrome gives us each a unique perspective to be able to help each other navigate this rocky path. If your child is younger at diagnosis, you may become overwhelmed with navigating all of their developing healthcare needs; as parents who have been on the same path, we can help. For the parent/caregiver to the older child who has just received this diagnosis after years of searching, you may be wondering: What does this mean for me/us? We hope that you will feel welcomed and find the answers for which you have been searching while also being the light and the guide for our families with children younger than yours.
In our ultra-rare community, the parents, caregivers, and family members are the best advocates to help our loved ones with Ogden Syndrome reach their fullest potential. We, the Foundation, strive to be a beacon of hope and a pillar of strength for us all.
Whether your diagnosis is still new or you've been living with Ogden Syndrome for some time, this Foundation is here to support you.