Sara Mazzilli Sara Mazzilli

Organization Spotlight: Inspire

Inspire is the world’s largest online community built entirely around the experiences of patients and caregivers. With more than three million members across 250+ condition-specific communities, Inspire offers a place where people can find support, information, and belonging.

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Sara Mazzilli Sara Mazzilli

How a Second Opinion Changed My Daughter’s Life with Multiple Sclerosis

After 14 years of misdiagnosis and debilitating illness labeled as Lyme disease, a mother uncovers the truth—her daughter had aggressive multiple sclerosis (MS). Told through the lens of a fierce advocate and cancer survivor, this emotional account highlights the life-changing impact of finding the right doctor and fighting for those you love when they can’t fight for themselves.

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Sara Mazzilli Sara Mazzilli

Finding Your Voice: Writing About Your Rare Disease Story

Watch an intimate and inspiring conversation between Erin Paterson, an internationally recognized rare disease advocate and bestselling author, and Laura Will, a nurse practitioner, writer, and mother of a child with a rare brain malformation. Together, they will explore the complexities of living with and caring for individuals with rare diseases, sharing personal stories, coping strategies, and the power of community.

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Sara Mazzilli Sara Mazzilli

Share your Rare: Sierra Domb

Sierra Domb is a neuroscience research collaborator and health communicator living with erythromelalgia, a rare neurovascular peripheral pain disorder. She shares her diagnostic journey and provides tips for managing symptoms and developing resilience in the face of rare disease.

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Sara Mazzilli Sara Mazzilli

Five Years of Waiting Rooms

A heartfelt mother’s account on five years of navigating pediatric specialist waiting rooms with her medically complex child.

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Sara Mazzilli Sara Mazzilli

Owning What Makes Us Rare

A powerful personal journey through Koolen-de Vries syndrome, ADHD, and neurodivergent parenting. Discover how one mother turned diagnosis into empowerment, embracing difference, healing guilt, and raising resilient, remarkable children in a world that doesn’t always understand.

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Sara Mazzilli Sara Mazzilli

Understanding Epidermolysis Bullosa: A Journey of Pain and Perseverance

Toni Roberts lives with Epidermolysis Bullosa, a rare genetic disorder that causes the skin to be extremely fragile and prone to blistering and tearing. Toni’s condition profoundly impacted her older sister, Cady Ward. Witnessing Toni’s daily struggles and challenges, Cady was inspired to become an advocate for rare disease and take on an extraordinary challenge—run an ultra-marathon.

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CHANGEMAKERS Evelyn Leigh CHANGEMAKERS Evelyn Leigh

Dr. David Fajgenbaum: How one doctor turned hope into action to treat his own rare disease

Dr. David Fajgenbaum was in his third year of medical school when a rare and mysterious illness derailed his plans. Crushing fatigue, abdominal pain, and multiple swollen lymph nodes progressed rapidly, and he found himself in the ICU with multiple system organ failure. Recovering from the brink of death, he was diagnosed with Castleman disease (CD), a rare condition that at the time was thought to be a lymph node disease with similarities to cancer.

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