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...Learning how to advocate for yourself can be challenging. It's certainly a learning process, and it is often difficult to stick up for oneself in social situations. Here are a...

...As I shared in a previous article, rare disease advocacy can include writing and requesting proclamations. Proclamations can be made by organizations and at various levels of government. In my...

...Finding a job with a supportive and understanding employer can be an ongoing challenge for those of us raising a child with a rare disease. Complex situations and unique challenges...

...Sigh… I hesitated writing about this topic out of the initial shame I felt in even having gone through any of what I am about to share here. But I...

...Living with a rare disease can often make individuals feel isolated and misunderstood. However, in this vast and interconnected world, nobody should have to face these challenges alone. The rare...

...Recently, I had the privilege of attending Portland Pride. The weekend was jam-packed with all sorts of events and parties celebrating the beautiful and diverse LGBTQIA+ community. As a queer...

...Reacting versus responding. There's a difference between them that can be ignored or forgotten. Reacting is that gut punch reflex that tells us we must act now, not later —...

...As the sounds settle down for the night and your child falls asleep, your night is just beginning. You ensure that everything that needs to get done gets done –...

...In a time marked by heightened awareness and discord surrounding reproductive health, caregivers of children with rare diseases carry a unique burden – the preservation of their child's fertility. As...

...Chronic pain, unfortunately, seems to accompany rare diseases too often. I began having chronic pain early on with my rare disease, and it is what led to my diagnosis of...