People living with rare diseases are not only faced with the complications and challenges of the disease itself but also dealing with a world where so few other people understand what they’re going through. Sharing stories about the lives of people with rare diseases can help people in the rare disease community feel seen, understood, and connected – and help those outside the community learn and understand more about the lives of people living with rare diseases.
And since 70 percent of rare diseases start in childhood, that understanding and connection can be even more crucial for tweens, teens and young adults whose lives are complicated by the impact of a rare disease – either due to their own diagnosis or that of a close family member. Young Adult (YA) books that portray rare conditions accurately and without resorting to stereotypes or, worse, misinformation or tokenism, become critically important for opening windows and doors to the rare disease community.
Stories in rare can be done thoughtfully, authentically, and respectfully. Below we’ve highlighted five YA books from varying perspectives that inspire, inform, empower and create connections around rare diseases.