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.
Read MoreHow writer Chris Anselmo confronts one of the most challenging yet persistent aspects of living with rare disease.
Read MoreOngoing clinical trials are paving the way for reducing steroid dependency and improving treatment options for various medical conditions.
Read MoreAs a pivotal diagnostic date approaches, a Rare Mom reflects on the complicated emotions associated with pregnancy.
Read MoreKnow Rare's Medical Advisor, led the Mass General for Children’s Storybook Ball, raising $1.9 million for innovative healthcare and research, while sharing her own personal rare disease journey, and highlighting Know Rare's mission to connect and empower individuals living with rare conditions.
Read MoreSpecial diets can be a challenging but necessary part of rare disease treatment. Here, a leading dietician offers advice for supporting nutrition from birth through adulthood.
Read MoreOne Rare Mom gets the unvarnished truth on the challenges families face when living with this complicated condition.
Read MoreTips from Know Rare on what to do and what to say to be a supportive ally to a friend, family member, or other loved one who has been diagnosed with a rare disease.
Read MoreLearn 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.
Read MoreA mother to a child with a rare condition discusses palliative care programs and how they’ve impacted her family.
Read MoreA new treatment for myasthenia gravis, a rare neuromuscular condition, has been approved by the FDA thanks in part to the success of a clinical trial that Know Rare helped to recruit patients for.
Read MoreRare mom Samantha Deschenes gives us an unfiltered look into life as a parent to a child with refractory seizures.
Read MoreJoin Know Rare in a heartfelt exploration of the profound impact of journaling on the lives of those touched by rare diseases. In the “Know Rare Connect: Journaling Your Journey” webinar.
Read MoreIn this recap of our first live Know Rare Connect event, we meet some incredible members of the Know Rare team and hear their stories.
Read MoreStorytelling is a powerful way to process adversity and make a difference in someone else's life.
Read MoreIt is important to find others who understand what you're going through.
Read MoreKnowRare is thrilled to be partnering with Chris Anselmo, author of “Hello, Adversity,” as he becomes a regular contributor to our platform.
Read MoreThe bittersweet and unpredictable chain of events that made Donna Rae Menard a believer in the clinical trial process.
Read MoreSRNA is a not-for-profit, international organization dedicated to the support of children, adolescents, and adults with a spectrum of rare neuroimmune disorders. Learn more about their work, community, and resources.
Cure CMD is a non-profit organization whose mission is to advance research toward treatments for congenital muscular dystrophies (CMD) and improve the lives of those living with CMD through the engagement and support of their community.
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