Articles, Events, & Opportunities

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...

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...