Rare Human Lindsay shares her "silver linings." It's not 'what doesn't kill you makes you stronger,' instead it's what doesn't kill you makes you braver. She shares that she has found deeper connections with others, improved her ability to ask for and accept help, and not been as afraid of the word "no."

What is the worst thing that you could say to someone living with a rare disease?

Journalist and rare disease advocate Lindsay Guentzel breaks down why clinical trials are a lifeline for the rare disease community. With only 5% of known rare diseases having an FDA-approved therapy, trials often represent the only path toward treatment, progress, and hope.

Lindsay was diagnosed with dermatomyositis a couple of years ago. Since then, she has undergone more than 350 doctor appointments, 250+ hours of infusions, 10+ ER visits, while juggling insurance approvals, rides, and her pain and fatigue.

Rare Human Lindsay is in the midst of her first clinical trial for dermatomyositis, a rare inflammatory disease that primarily affects the skin and muscles. So far, she has learned so much about the process and is eager to share some of her insights with the rare disease community.

While in a clinical study, Lindsay talks about how hard it is not to have a community to turn to, especially when there are only a few patients with her rare disease (dermatomyositis) who have experienced the same treatment she just went through.

Find out what Rare Human Lindsay discovered about the clinical trial selection process after joining a clinical study for her dermatomyositis.

For the past 7 months, Rare Human @ lindsay has been trying to enroll in a clinical trial for her dermatomyositis. Learn about the challenges that she faced along the way and how her rheumatologist helped her receive out-of-state insurance coverage.

Gina DeMillo Wagner talks about her book on grief, family chaos, and the invisible weight carried by siblings of those with complex illness.

Watch an intimate and inspiring conversation between Erin Paterson, an internationally recognized rare disease advocate and bestselling author, and Laura Will, a nurse practitioner, writer, and mother of a child with a rare brain malformation. Together, they will explore the complexities of living with and caring for individuals with rare diseases, sharing personal stories, coping strategies, and the power of community.

On the “Rare Insights” podcast we bridge the gap between those living with rare diseases and the biopharmaceutical industry.

Journalist Lindsay Guentzel describes navigating a diagnostic odyssey and how she manages day-to-day life with myositis in an impactful webinar.

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.