Articles, Events, & Opportunities

I had a dream (or was it a nightmare?) last night about my disease symptoms increasing rapidly. I woke up blurry-eyed, slightly bemused that this had entered my dreamscape and...

I am not going to lie and say that being a rare disease parent is easy. It is often a challenge for me to get through the day. I feel...

The most consistently bothersome aspect of living with hemophilia is my left ankle. Due to both minor and, on rare occasions, major bleeding into the joint, I have very little...

My life was upended because of a viral infection 20 years ago. In the fall of 2003, I was working in a children's hospital, and I had many contracts in...

"You are not alone." These are the 4 most common words I choose to tell another caregiver. I know how heavy it feels to receive the news of a child's...

With any medical event, but especially when it's a chronic illness or rare disease, medical debt can easily build up. Depending on where one lives, the cost of medical testing...

The best thing that has come out of being part of the rare disease community is the passionate, loving, and optimistic people I have met. The ones that, even on...

Access to lush, green natural spaces feels like a privilege to me. As a person living with a rare disease, narcolepsy, it isn't always easy to safely access the outdoors...

Humor plays a huge role in my life. I'm pretty open about having hemophilia A, and I rarely miss an opportunity to make my friends laugh. For instance, I recently...

I remember the day the genetic counselor called me with my son's diagnosis. She gave me information about a paper published on PubMed, and said that another family had set...

It can be so hard for people outside of the rare disease community to truly understand what we go through – ongoing symptoms, fatigue, never-ending appointments with specialists, continuously adjusting...

It was 2018, and I turned 50 years old in March. The following month, we lost our oldest son to a brain tumor. He was only 22 years old. It...

Having a rare disease poses problems many people can not imagine. It can be discouraging to share your experiences when others do not know your story. But it is valuable...

Let’s talk awareness proclamations. It’s likely fair to say that most of us have seen an awareness proclamation announcement by a city, state, or even country for something. Awareness proclamations...

It is hard to remember what my life was like before having a child with a rare disease. I became the caregiver of my firstborn son when I was still...

One of the most exciting parts of the advent of the internet was the ability to quickly communicate with others from around the world. The first message boards, also known...

Have you ever been so affected by your rare disease that you weren't able to go grocery shopping, leaving your pantry empty for days or weeks at a time with...

Someone told me today that I was an inspiration. It's not the first time. In 2010, when I had the immense luck to be selected to go and work with...

As a young child, I was surrounded by the most amazing family. There were family gatherings, family vacations, and memories. And then, one day, nothing was the same. I found...

Social situations can be very difficult to navigate with a rare disease or chronic illness. From navigating logistics to friends just not quite getting it, it can certainly feel exhausting...