Article • May 11, 2026

Tina’s Big Trip

Tina’s Big Trip: A rare disease story about going the extra mile, is the newest title in Alexion, AstraZeneca Rare Disease’s Inspired By book series created to support the rare disease community, and especially families impacted by rare diseases. The story, which follows two sisters preparing for a journey to Italy with their father, reflects the daily resilience that families demonstrate while managing the unseen complexities of living with a rare disease.

Rare disease significantly affects families—7 in 10 rare diseases start in childhood¹, and receiving an accurate diagnosis often requires numerous visits with health care specialists². Caregivers, predominantly parents, are the steady presence guiding patients through a long, emotional, and often isolating process. Tina’s Big Trip honours this experience as seen through the eyes of those who live it.

A caregiver who previewed the book shared a heartfelt response:

It brought a few tears to my eyes… Sometimes I don’t even realize all the struggles we go through."

The book was inspired by Gianluca Pirozzi, Senior Vice President at Alexion, AstraZeneca Rare Disease. With more than 20 years of experience in rare and non-rare disease therapy development, Pirozzi brought both professional expertise and personal experience to the project. As the parent of a child with a rare disease, he has spoken openly about the sense of isolation caregivers can feel. “You’re alone. Nobody understands you,” he shared during an internal company meeting in 2025, a moment that sparked the idea for the book.

The Inspired By series underscores Alexion’s ongoing commitment to elevate understanding of rare diseases and to highlight the lived experiences of patients and caregivers. Since its inception in 2021, the series has offered approachable, age-appropriate stories that help families discuss rare diseases with young children in meaningful and compassionate ways.

At Alexion, we are driven by a mission to change what it means to live with a rare disease. Through educational resources like the Inspired By book series, we aim to deepen understanding, spark conversation, and support the families who demonstrate strength and courage every day—because every journey matters, and every story helps.

Click here to download a digital copy of Tina’s Big Trip.

References

Rare disease facts [Internet]. 2026 [cited 2026 Apr 1]. Available from: https://globalgenes.org/rare-disease-facts/
National Organization for Rare Disorders (2020, November 19). Barriers to Rare Disease Diagnosis, Care and Treatment in the U.S.: A 30 Year Comparative Analysis. [cited 2026 Apr 7]. Available from: https://rarediseases.org/wp-content/uploads/2020/11/NRD-2088-Barriers-30-Yr-Survey-Report_FNL-2.pdf

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