One Rare Mom gets the unvarnished truth on the challenges families face when living with this complicated condition.

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.

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.

A mother to a child with a rare condition discusses palliative care programs and how they’ve impacted her family. 

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.

Rare mom Samantha Deschenes gives us an unfiltered look into life as a parent to a child with refractory seizures.

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.

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.

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.

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.

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.

AVM Alliance is a 501(c)(3) charity dedicated to filling the needs of the pediatric Brain AVM & Stroke community, helping parents of children who have been affected by brain vessel disease and Stroke.

For many of us in the rare disease community who have no approved treatments available, clinical trials are a powerful source of hope. Read on to learn about the benefits of joining a research study and how you can take part in one.

Know Rare conducted a survey to find out how much people, who are diagnosed with myositis, know about their condition. Read on to access the results and to learn more about myositis-specific antibodies.

If you are interested in joining a research study, you may encounter some difficulties in navigating clinical trial listings. Here’s a quick guide to help you understand the terminology you might find in a clinical trial listing.

As a child, Becky Tilley often felt like she didn’t fit in or wasn’t as successful as other kids in most academic areas… except for one subject: English. Her love for reading and writing returned in her adulthood, when she started blogging about living with a rare disease called Koolen-de Vries. Learn about her newest book, Thrive Rare: Embracing the Uniqueness Within, born of her desire to spread hope.

I was twenty-six years old, a filmmaker, leading a totally normal and healthy life, until I was diagnosed with myasthenia gravis. My name is Krystel El Koussa, and this is my story.