RARE Toolkits


These toolkits are made available courtesy of Global Genes – Foundation Alliance.

Do you worry about how to best help your rare patient? Do you wonder if there is literature available to assist you with this journey? Well, we have good news for you! The links below will direct you to information that will assist you, as you travel your unique journey.

Toolkits specific to the needs of our unique patients:

Once Upon a Time

Care Notebook

Building Relationships with Your Representatives

Educational Advocacy

Navigating a Teens Emotions 

Navigating Health Insurance

Taking Charge as a Young Adult

Want to learn more:
All available toolkits