Perhaps the most agonizing part of chronic illness is the inconsistency, one day you feel fine and go do chores or work with no problem,...

Life often presents us with unexpected challenges, and for me, one of those challenges was being diagnosed with Ehlers-Danlos Syndrome...

Living with a rare disease, chronic illness or invisible disability often involves finding ways to express and connect with others who...

When we think of celebrities, we often envision a life of glitz and glamor, seemingly untouched by the struggles faced by ordinary...

There have been a few things I had to learn as a Canadian mother raising American kids - mostly remembering to care about the high school...

What does it mean to be rare? For some people, it can mean standing out in a crowd. For others, it may mean standing against convention....

"When I Discover Who I Am, I'll Be Free" The incomparable writer Ralph Ellison wrote these words in his iconic work, Invisible Man - a...

Learning to advocate for yourself is a long process, and can be even more difficult when you have a rare, chronic or invisible illness....

Rare diseases, chronic illness and invisible conditions all present many, many challenges both to individuals and the medical community....

"When you hear hoofbeats, think horses, not zebras." This is a quote from Dr. Theodore Woodward. Its purpose is to educate doctors to...

Rare Disease Day is about creating a “community that is multi-disease, global, and diverse– but united in purpose.” Rare Disease Day was...

“Never apologize for burning too brightly or collapsing into yourself every night. That is how galaxies are made.” ― Tyler Kent White We...

An invisible disability is a physical, mental, or neurological condition that is not immediately apparent to others, and may include...