RARE Toolkits

Below is a list of all of our current RARE Toolkits.

Building a Care Notebook



Papers in a ring binder


This toolkit will help patients and caregivers to maintain a care notebook, a central place for gathering and organizing information relating to the ongoing care of their own or their child’s rare disease. Beyond the practical reasons for collecting all of the information relating to a patient’s care in a single place, the care notebook is a powerful tool for helping patients take charge of their own healthcare and ensure they play an active role in their care. It will help ensure they are prepared for talking to doctors, insurance companies, or others who are central to providing medical care, insurance coverage and support. Creating a care notebook also will help keep questions at the ready to help patients get the answers they need when they need them.