As we head into 2024, we’ve taken a moment to look back at some of the latest headlines in rare disease from the last year.

Hello, Adversity author Chris Anselmo delves into the common obstacles that make seeking help challenging, particularly for many people living with rare disease, and the transformative power of overcoming those mental blocks.

Edgewise’s investigational drug is a pioneering treatment for Duchenne and Becker muscular dystrophies.

It’s National Influenza Vaccination Week: find out why the flu vaccine should be a critical part of your winter to-do list.

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.

How writer Chris Anselmo confronts one of the most challenging yet persistent aspects of living with rare disease.

Ongoing clinical trials are paving the way for reducing steroid dependency and improving treatment options for various medical conditions.

As a pivotal diagnostic date approaches, a Rare Mom reflects on the complicated emotions associated with pregnancy.

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.

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. 

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.