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...I try to approach life by considering others' perspectives, not just mine. Sometimes, though, I fail at this. As a rare disease advocate, I'm not free of or above unintentional...

...When living with a rare disease, how often do you disclose your needs? Daily? Weekly? Monthly? Living with a rare disease usually means that other people aren't well-informed about my...

...15 years ago, I became the mother of a daughter who lives with a rare disease. My daughter has a rare disease, but that doesn't stop me from dreaming big...

...I want to talk to you about something close to my heart – preparing your high school child living with a rare disease for college. In the words of Robin...

...I have been fortunate to have my mother and grandfather to share my rare disease journey with me, as one of our shared rare diseases, familial adenomatous polyposis (FAP), is...

...Sending my child to a specialized school for special needs has been a deeply emotional journey, marked by feelings ranging from hope to heartache. This decision, often fraught with complexities...

...Recently, I thought I had found a group of friends who would stick by my side, who understood what I was going through, or at least tried to. I live...

...I have been learning more about scarcity mindset, and it got me thinking about how common and easy it is to fall into such a mindset when living with a...

...Our rare disease journey began with concerns that the pediatrician dismissed as normal quirks. My child was slow to reach milestones, but the doctor reassured us each time we asked...

...When I think about the characteristics I need in a friend due to my rare diseases, I mostly need someone who is empathetic and flexible. In encounters with people who...

...With a rare disease, it seems it doesn't take much for us to enter the world of becoming a complex rare disease. And with more symptoms or health issues to...