Rare Disease Resources

Insights for reading the book Extraordinary! to children without rare diseases. By Kara Ayik, educator, parent and co-author of Extraordinary! A Book for Children with Rare Diseases.

Courageous Parents Network is a non-profit organization and educational platform that orients, empowers and accompanies families and providers caring for children with serious illness. 

A globally connected community committed to eliminating the challenges of rare disease. Global Genes provides information, resources and connections.

NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives.  

Our mission is to promote and enhance the emotional and mental well-being of individuals with facial differences and their families 

A global news and opinion, digital magazine platform, dedicated to powering up the voices of the youth rare disease community.

Digital magazine giving a voice to those affected by rare conditions and the charities that support them.

A web app that simplifies organizing, managing and sharing medical & care information for your loved one(s).

A non-profit organization dedicated to changing the faces – and transforming the lives – of children and adults with facial differences.