Have a Rare Disease
Worldwide, the number of people living with a rare disease.
Affects Children
Half of all diagnoses; Includes childhood cancers
Identified Rare Diseases
With countless others that haven’t been identified … yet
Rare Disease Day is Personal
Because it impacts me, it’s very personal. My husband and three sons all share the same rare disease — Axenfeld-Rieger Syndrome. Our youngest son also has Miller Dieker Syndrome.
Chances are, you already know several others who have a rare disease – you just don’t know it yet.
Rare Disease Images to take and share
These images are from a few years back (see the old Cafe logo!) but are favorites in some of the groups I’m in. They’re freely available to use wherever you want to spread a little awareness.
This year I used the informative images from RareDiseaseDay.org – please take them and spread them around as well!
Rare Disease Advocacy Takes Many Forms
But it all starts with learning more.
The following websites are amazing resources for those who want to learn more, join in advocacy efforts (for Rare Disease Day or every day), or find out about a specific rare disorder.
Are you a parent or caregiver and want to learn more? Are you overwhelmed or need help navigating this new diagnosis? Please don’t hesitate to reach out to me on any of my posts or on social media and I will be happy to personally help connect you with the appropriate resources.
Global Genes
Worldwide rare disease resource with general information on identified rare diseases.
National Organization for Rare Diseases
Find information on identified rare disorders.
