Have you noticed that your symptoms fluctuate or change, sometimes unexpectedly, as a person with a rare disease? I have type 1 narcolepsy with cataplexy, and it feels like my...

Ever since I've been diagnosed with the first of my 3 rare diseases, Ehlers-Danlos syndrome (EDS), I've tried to stay informed. It's been important to me because, as with most...

Not long ago, I had a conversation with my daughter that caught me off guard, though not for the reasons one might expect. We sat together, enjoying a rare moment...

Have you noticed that your symptoms fluctuate or change, sometimes unexpectedly, as a person with a rare disease? I have type 1 narcolepsy with cataplexy, and it feels like my...

Ever since I've been diagnosed with the first of my 3 rare diseases, Ehlers-Danlos syndrome (EDS), I've tried to stay informed. It's been important to me because, as with most...

Not long ago, I had a conversation with my daughter that caught me off guard, though not for the reasons one might expect. We sat together, enjoying a rare moment...