Ogden C.A.R.E.S.
Information for Family Services dealing with Ogden Syndrome (NAA10-related Syndrome).
For Families
- Ogden C.A.R.E.S. exists to provide families support battling rare diseases like the Ogden Syndrome
- Links to Specialists and Care Coordination, Therapy-Related Services, and Helpful Hacks
- 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.
- No need to deal with the uncertainties of a rare disease alone, join a support group to make it easier.
While our journeys are unique, the commonality of our children sharing the same genetic syndrome gives each of us a unique perspective to be able to help one another 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, at Ogden C.A.R.E.S.,, 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.
