There are so many resources out there for the rare disease and disability community. These are just a few that I found helpful as we were deep in our diagnosis journey, shortly after learning about Avery's rare variant, and as I learned to parent a rare disease and disabled child. Adding more soon!
All of Effie's episodes are incredibly informative, relatable, and insightful. If you're new to the Rare Disease Community I highly recommend listening to the episode linked below, "Beginners Guide to Rare Disease - Anecdotes for Those Early Days of Diagnosis".
Taking her engaging website and content into podcasts, Nikki interviews amazing guests and helps parents of rare disease kids become confident, supported advocates for themselves and their family.
Founded by two rare disease dads, Disorder: The Rare Disease Film Festival was sidelined due to COVID. They quickly adjusted and launched The Disorder Channel for free on Roku and Amazon Fire TV showcasing films and content about rare disease.
By Melanie Dimmitt
Antidotes to the obsessions that come with
a child's disability
By Alice Wong
First Person Stories from the Twenty First Century
Global Genes is committed to providing information, resources and connection to communities affected by rare disease
Empowers the rare disease patient community to advocate for science driven legislation and policy
