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.
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.
In the Shadow of Rare: Growing Up as the Healthy Sibling
Gina DeMillo Wagner talks about her book on grief, family chaos, and the invisible weight carried by siblings of those with complex illness.
Life Hacks for Mobility Challenges: Bathroom Safety Tips and Tricks
When you’re living with a rare disease or loving someone who does, mobility challenges can be both physically and emotionally demanding. Here are some bathroom hacks.
Life Hacks for Mobility Challenges: Pool Noodles to the Rescue
When you’re living with a rare disease or loving someone who does, mobility challenges can be both physically and emotionally demanding. Here are a few clever ways to use pool noodles.
Life Hacks for Mobility Challenges: Dress with Success
When you’re living with a rare disease or loving someone who does, mobility challenges can be both physically and emotionally demanding. Here are some tips for dressing with easiness.
Life Hacks for Mobility Challenges: Get Smart in the Home
When you’re living with a rare disease or loving someone who does, mobility challenges can be both physically and emotionally demanding. Here are some ideas for making your home smarter.
Life Hacks for Mobility Challenges: Tips for the Kitchen
When you’re living with a rare disease or loving someone who does, mobility challenges can be both physically and emotionally demanding. Here are some tips for getting creative in the kitchen.
How ITP Patients and Doctors Perceive Fatigue Differently — and How Journaling and Setting Goals Can Help
Discover how ITP patients and physicians differ in their views on fatigue—and how journaling and goal-setting tools can help reduce fatigue and improve overall quality of life.
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.
IgA Nephropathy Patients With Family History Face Higher Kidney Risks
Discover how genetics and family history influence IgA Nephropathy (IgAN) risk and development, especially in Asian populations.
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.
How IgA Nephropathy Is Treated: A Look at Today’s Medications and Tomorrow’s Breakthroughs
Discover the latest treatments for IgA Nephropathy (IgAN), a rare kidney disease. Learn how current medications and emerging therapies work to slow progression, reduce proteinuria, and protect kidney function.
Empowering Patients: The Role of Education in Rare Disease Treatment Plans
Discover how patient education empowers individuals with rare diseases to better understand their diagnosis, make informed decisions, and actively participate in their treatment plans. Learn why clear, compassionate communication is key to improving outcomes in rare disease care.
Five Years of Waiting Rooms
A heartfelt mother’s account on five years of navigating pediatric specialist waiting rooms with her medically complex child.
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.
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.
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.