A family’s hardships and resilience in finding answers and getting a diagnosis for their child, after numerous tests, brain biopsies, and hospitalizations. And the relief but also grief in finally putting a name to the rare disease that affects their child: BCL11B-related disorder.

A heartfelt story about a mother who found purpose and strength among the tragedy of losing a child diagnosed with an ultra rare genetic disorder.

Ein Prosagedicht von Jim Kuhn, einem seltenen Kämpfer, der mit Sarkoidose, einer seltenen Entzündungskrankheit, lebt.

Four years ago, Michael Grivas’ life suddenly changed when he learned that he had Brugada Syndrome, a genetic disorder in which the electrical activity of the heart is abnormal due to channelopathy. Learn more about his story.

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.

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.

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.

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.

After his diagnosis of limb-girdle muscular dystrophy type 2B at age 21, Chris initially opted for a safe career path, choosing jobs with steady income, benefits, and predictability. However, this decision made him feel like something was missing. Find out how Chris was finally able to follow his heart, finding purpose and contentment in becoming a writer.

Learn about the incredible story of Edward Gent, a Sports Nutritionist diagnosed with MMN, who decided to create an app to help others worldwide with their disease and symptom management.

Know Rare writer Gina DeMillo Wagner’s new memoir, Forces of Nature explores powerful themes related to caregiving and rare disease.

Die Journalistin Lindsay Guentzel gewährt einen Einblick in das Leben mit dieser seltenen Muskelerkrankung.

Many people living with rare disease describe life in terms of before and after: Before a diagnosis, they experience frustration, confusion, and exhaustion as they see various doctors and try to make sense of their symptoms. After a diagnosis, they may experience waves of relief mixed with a determination to find treatments – and often, grief about the impacts of the disease on their lives. No one understands how it feels to step across that invisible before-and-after line better than Julia Lefelar, Executive Director and Co-founder of the MOG Project.

Orit recently joined the Know Rare business development team with the goal of helping other caregivers and patients learn more about how to engage with clinical studies and other opportunities for support. Here’s how she is reframing attitudes towards life with a rare condition.

Caitlin Eppes shares the inspiring story of The Avery Project, an initiative named after her daughter and dedicated to research of her rare genetic variant, and discusses how her family defied one-in-a-million odds to find a breakthrough in their diagnostic journey.

Learn what Certified Child Life Specialists do and why they can be a major asset to families navigating rare disease journeys in this story by Katie Whelan, a Certified Child Life Specialist & Family Engagement Coordinator.

Storytelling is a powerful way to process adversity and make a difference in someone else's life. 

It is important to find others who understand what you're going through.

Know Rare is thrilled to be partnering with Chris Anselmo, author of “Hello, Adversity,” as he becomes a regular contributor to our platform.

The bittersweet and unpredictable chain of events that made Donna Rae Menard a believer in the clinical trial process.