patient privacy is always at the forefront of everything we do. 

When we began this not for profit our main goal was only to be a resource for families in need.  We found ourselves with the birth of our daughter Ireland, navigating the rare disease world and being swallowed up by opinions and ideas that had nothing to do with the condition that she had been diagnosed with.  We thought we would do our part to help other families who found themselves in similar position, not feel so alone and isolated. We wanted to help pave a path to the answers so desperately needed.  Along the way we have run in to many obstacles and successes, but one thing often reiterated is that families need a space that provides safety, security and support.  This platform is for patients and their families and/or caregivers and we hope you join us!