Children’s Book Series is Inspired By Patients Living with Rare Diseases
At Alexion, our mission is to transform the lives of people affected by rare diseases and one of the tangible ways we raise awareness is by developing tools and resources to educate about the impact of rare diseases on patients, caregivers, and families. Beginning in 2021, Alexion has partnered with the broader rare disease community to create the Inspired By book series, a collection of stories to help families with young children talk about rare diseases in an approachable and age-appropriate way.
Alexion launched Inspired By with the introduction of the first book in the series in June 2021. Klara’s Talent was inspired by Rachel, a real mom living with generalized myasthenia gravis (gMG), a debilitating, chronic, and progressive autoimmune neuromuscular disease.1
While speaking with Alexion, Rachel wondered aloud how she would explain gMG to her young daughter, saying, “I wish there was a book I could read to her.” In that moment, Klara’s Talent was born.
The second book, A Day with Nurse Jen, is dedicated to young patients and families affected by atypical hemolytic uremic syndrome (aHUS), a genetic, chronic, rare disease that can progressively damage vital organs and can lead to stroke, heart attack, kidney failure, and death.2
The third book, Zara Shares Her Stripes, is a story about accepting your rare condition and finding a supportive community. The book was inspired by three members of the rare disease community—Deja, who lives with gMG; Kristin who lives with neuromyelitis optica spectrum disorder (NMOSD); and Anndria, whose daughter lives with a deficiency of argininosuccinate lyase (ASL).
Let's Make a Memory, the latest book in the series, is a story based on Arlin, a real-life mother and physician living with NMOSD, and her daughter. The book recounts their experiences and conversations, as the daughter in the story comes to better understand how her mom’s rare autoimmune condition impacts her day-to-day life.
The Inspired By series embodies Alexion’s commitment to the rare disease community and to raising disease awareness among people of all ages. To order a complimentary copy of any book in this series for yourself, for someone you know affected by a rare disease, or for a patient support group, please visit AlexionInspiredByBooks.com
References:
- NORD. Myasthenia Gravis. Available at: https://rarediseases.org/rare-diseases/myasthenia-gravis/. Accessed June 2023.
- NIH. Atypical hemolytic uremic syndrome. Available at: https://rarediseases.info.nih.gov/diseases/8702/atypical-hemolytic-uremic-syndrome. Accessed June 2023.
More articles you may like
Media [News] • April 10, 2025
Advancing Rare Disease Research Through Patient-Centric Trial Design
As Head of Development, Regulatory and Safety at Alexion, Gianluca Pirozzi channels his life’s experience with rare disease to inform his work at Alexion, ensuring clinical programmes are fueled by a patient-focused mindset.
Article • February 24, 2025
Supporting Patients on Rare Disease Day, and Every Day
Rare Disease Day recognizes the 400 million people worldwide – and 30 million in the United States – who are living with a rare disease. While significant progress has been made in understanding rare diseases and developing treatments, the need for continued awareness, research and support is as great as ever.
Patient Support • February 05, 2025
Addressing the Unmet Needs of the Amyloidosis Community
We spoke with Cristina Quarta, Executive Medical Director, about a group of rare diseases known as amyloidosis, the medical needs within this community and how her work as a cardiologist shapes her approach to research and development (R&D) for rare cardiac conditions.
Patient Support • September 23, 2024
Shortening the Path to Diagnosis in Rare Disease
With 10,000 known rare diseases defined today, the path to diagnosis can often resemble a puzzle, with physicians as detectives searching for clues. Many physicians never encounter a rare disease beyond the pages of their medical school textbooks.
Research and Development • September 18, 2024
Getting to know Nick France, an Alexion R&D Leading Voice
To create meaningful advances in rare disease research, it takes an innovative culture, strong collaboration, and a patient-centric vision for delivering transformational solutions. At Alexion, these pillars are important to successfully develop impactful medicines for patients.
Patient Support • June 25, 2024
Getting to know Chathuri Daluwatte, an Alexion R&D Leading Voice
Artificial Intelligence (AI) is rapidly advancing and has the potential to have a transformative impact on clinical research and development (R&D).
Research and Development • June 08, 2024
Getting to know Seng Cheng, an Alexion R&D Leading Voice
There is a sense of urgency that underlies research in rare diseases, because these diseases are often rapidly progressive.
Patient Support • April 18, 2024
Getting to know Sophia Zilber, Associate Director, Statistical Programming
The voices and perspectives of patients play an essential role in rare disease research and development (R&D).
Patient Support • April 16, 2024
Getting to know Banu Sankaran, an Alexion R&D Leading Voice
Diagnostics and artificial intelligence (AI) systems are transforming research and development (R&D) in the healthcare industry.
Health Equity • February 06, 2024
Driving health equity for the rare disease community
Collectively, more than 400 million people around the world are living with a rare disease, defined as conditions that affect a small number of people compared to the general population.