Why We Do What We Do!
Having a diagnosis of a rare disease or being the caregiver of a person with a rare disease can be incredibly challenging. We are here to make changes and pave a road for the future.
For our Rare Disease Patients
We know the road has been hard, we know that it has been scary and aggravating and full of uncertainty and we want to create a home for you, where you can get the information you need when you need it!.
For Our Rare Disease Families
We are here to support each and everyone of your at every step of the way. If we don't have an answer we will do whatever we can to help you find someone who does!