One Step at A Time…..

DISCUSSION FORUM

Sharing information is so important for the support of our rare disease community.  Thank you sharing your questions and successes.  

This page and the providers forum is meant for parents, families, therapists and physicians to use in hopes of sharing tips and advice, please note it is not secure and not a replacement for your medical team.  Do not post any personal information here, rather this is meant as a hub for information to assist you as you navigate your journey.