Rare Mom Laura shares how her family’s prep for Halloween turned into a burst of familial love and creativity, as they all worked together in designing and building a costume for Alden, her medically complex son.

Instead of starting with a newly discovered drug compound, PCOR is a type of research that starts by turning to patients and caregivers and asking, What matters most to you? What questions do we want answered? What symptoms do we wish were better managed? What keeps us up at night?

Four years ago, Michael Grivas’ life suddenly changed when he learned that he had Brugada Syndrome, a genetic disorder in which the electrical activity of the heart is abnormal due to channelopathy. Learn more about his story.

Fatigue is a very common and often debilitating symptom of IgAN. It is linked to disease progression and reduced kidney function, but other factors like inflammation, anemia, and mental health also play a role. In a 2025 study, the majority of patients with IgAN reported fatigue, and patients with more severe proteinuria and lower kidney filtration rates (eGFR) experienced worse fatigue. 

Why is it so hard to accept help? Humans often associate help with weakness and loss of independence and control. However, if we reframe our thoughts, accepting help can be viewed as a form of empowerment: showing vulnerability and trusting someone to help us requires great strength.

There is so much mental load with having a rare disease. Rare Human Lindsay shares there are things she does not care about anymore, as she manages rare disease symptoms, specialists, and clinical trials.

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.

Exploring the unique challenges rare-disease caregivers face, and how mindfulness and inner awareness can offer resilience and renewal.

Inspire is the world’s largest online community built entirely around the experiences of patients and caregivers. With more than three million members across 250+ condition-specific communities, Inspire offers a place where people can find support, information, and belonging.

After 14 years of misdiagnosis and debilitating illness labeled as Lyme disease, a mother uncovers the truth—her daughter had aggressive multiple sclerosis (MS). Told through the lens of a fierce advocate and cancer survivor, this emotional account highlights the life-changing impact of finding the right doctor and fighting for those you love when they can’t fight for themselves.

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

When you’re living with a rare disease or loving someone who does, mobility challenges can be both physically and emotionally demanding. Here are some bathroom hacks.

When you’re living with a rare disease or loving someone who does, mobility challenges can be both physically and emotionally demanding. Here are a few clever ways to use pool noodles.