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Patients & Caregivers

Educational Material

CLA Guide for Patients and Families


  • Sand Dollars and Swiss Cheese shares the life story of community member Amber McCall. She prays that her life experiences will encourage you, give you strength, and open you to the grace that is available to those who choose joy.

  • Using the analogy of a lion cub who doesn’t resemble his pack, the book explores the difficulties families can have to both obtain a diagnosis for a rare disease and discover a community who can provide information and support.

  • A Friendship Story, written by Serbian author Danijela Pešić, who herself lives with a rare disease (Pulmonary Arterial Hypertension–PAH). She wrote this book inspired by her own childhood experiences.