Whether you are new to the rare community or have been navigating your rare journey for years, you are not alone.

These resources, designed to help patients and families find extended support in Kansas City, include useful tips and information about education, community assistance, support services and mental health.

Mental Health Support


Need More?

If you did not find what you are looking for, our links are outdated or incorrect, or we missed a key resource that has guided you along your rare disease journey that you feel it would benefit others, please let us know. 

Feeling Alone?

Read stories from patients and families along their RARE journeys to find connections, lessons, and hope in their experiences.