How we came to be…
In the summer of 2019, four of our families met around a kitchen table while kids played loudly in the background, and they attempted to discuss what they want and need as parents on this extraordinary journey. The result of that conversation was the founding of the Ogden Syndrome Foundation, US, set into motion with the following goals in mind:
1) To provide help with navigating a rare disease that has no road map. This syndrome was only discovered in 2011, and little information is offered to newly diagnosed families. Having available resources that aim to provide guidance to families regarding specialists, therapists, equipment, etc. is immeasurably helpful.
2) To find and create opportunities to raise money in support of research aimed at discovering effective treatments and, ultimately, developing a cure.
3) To raise awareness of this extremely rare syndrome and align with other rare disease organizations to fight for the needs and rights of patients and their families.