Safeguard Your Holidays: The Importance of Flu Protection
It’s National Influenza Vaccination Week: find out why the flu vaccine should be a critical part of your winter to-do list.
Avery's Remarkable Rare Path: A One-in-a-Million Diagnostic Journey
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.
Anxiety: The Unwelcome Visitor
How writer Chris Anselmo confronts one of the most challenging yet persistent aspects of living with rare disease.
Have A Goal To Taper Off Your Use Of Steroids? Many Clinical Studies For New Drugs Share The Same Mission
Ongoing clinical trials are paving the way for reducing steroid dependency and improving treatment options for various medical conditions.
Pregnant After Rare: Week 30
As a pivotal diagnostic date approaches, a Rare Mom reflects on the complicated emotions associated with pregnancy.
From Medical Advisor to Fundraiser: A Mom and Know Rare Team Member Helps the Hospital that Helped Her
Know 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.
Expert Advice on Managing Nutrition for Rare Disease Patients: Insights from a Metabolic Dietitian
Special 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.
Refractory Epilepsy: Reflections and Insights from Parents and Clinicians
One Rare Mom gets the unvarnished truth on the challenges families face when living with this complicated condition.
Know Rare Tips: How to Support a Friend Who’s Been Diagnosed With a Rare Disease
Tips 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.
What is a Child Life Specialist?
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.
The Power of Palliative Care
A mother to a child with a rare condition discusses palliative care programs and how they’ve impacted her family.
Clinical Trial Paves the Way for a Groundbreaking New Myasthenia Gravis Treatment
A 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.
A Rare Mom's Take on Living with Refractory Seizures
Rare mom Samantha Deschenes gives us an unfiltered look into life as a parent to a child with refractory seizures.
Journaling Your Journey
Join 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.
Connect with Members of the Know Rare Team
In this recap of our first live Know Rare Connect event, we meet some incredible members of the Know Rare team and hear their stories.
We All Have a Story to Tell
Storytelling is a powerful way to process adversity and make a difference in someone else's life.
Role Models Light the Way
It is important to find others who understand what you're going through.
Hello, Adversity: Introducing Chris Anselmo
Know Rare is thrilled to be partnering with Chris Anselmo, author of “Hello, Adversity,” as he becomes a regular contributor to our platform.
My Unexpected and Powerful Clinical Trial Journey
The bittersweet and unpredictable chain of events that made Donna Rae Menard a believer in the clinical trial process.
Organization Spotlight: Siegel Rare Neuroimmune Association (SRNA)
SRNA 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.