welcome american ollier's disease association

Welcome to the American Ollier’s Disease Association.

My name is Jeanette and I’m a proud Mom of 4 and also an Occupational Therapist.

I said “someone should start a USA based organization” so many times that I realized I needed to be “someone.”

My lovingĀ and amazing 6-year-old son has Ollier’s Disease. We live in the USA in Pennsylvania and have been around from hospital to hospital, gone through several surgeries so far including limb lengthening an external fixator, many therapy hours and my hair is turning white quite literally. I wanted to have a place to gather information and in the future hold events like an annual conference, races and raise money to fund quality research studies that can help answer many of the whys parents of children with Ollier’s, caregivers and persons living with Ollier’s Disease face.

So welcome!

I am working on this as I have the opportunity and please check back for updates. Thanks for visiting!


2 thoughts on “Welcome!”

  • Jeanette,
    Thank you for starting this website! There are so many aspects of this rare disease to understand, and it’s always a challenge to know if I’m getting the appropriate information from my son’s current doctors.
    At the moment, I’m working on finding an appropriate bone tumor specialist so that we can formulate a plan to monitor the tumors. I would love to hear what other Olliers patients around the world do to monitor their tumors.

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