Caregiver is defined as a person who provides direct care (as for children, elderly people or the chronically ill). In the rare disease...

I define myself as an advocate and a caregiver. Before I was introduced to the rare disease world I went to school hoping to be a social...

I have been working on a lot since EMS World last month. Honestly I have been working to be sure that for my son there is a plan in place...

Since July you have probably noticed that this has been my focus, as far as this venue. That is because I did not have a proper plan in...

I have been MIA for a couple of months, but I am back! I had a planned vacation and then rare disease life took over and when that...

I have been MIA for the last few weeks and I wish I could say I was back in Bali sipping a fruity drink poolside. The truth is though,...

When rudely introduced to the rare disease world in December of 2015, one thing I found out is that we would be responsible for educating...

I am just returning from what was the vacation of a lifetime. My husband and I, along with 6 others spent a full week in a villa in Bali!...

If I had a dollar for every time I heard this, I would not have to worry about my rare kiddos financial future!! I hear it about the...

Let me start this off by saying I know that I am blessed that I still have my dad in my life. That is not something I take for granted...

In one of our forums recently a man asked if the illness he had was more common in men or if it was just that men were more likely to...

Everything I have told you about adrenal insufficiency is 100% true. It is backed my medical professionals throughout the world. Most...

Post Traumatic Stress Disorder commonly known as PTSD is defined as an anxiety disorder that develops in reaction to a physical injury...

Last week when I asked the question - if you had a one-on-one with your lawmaker what would you ask, one person mentioned eliminating...

I struggled on a title for this one, thought of "Less is More", "Win Some, Lose Some", but they all had positive or negative connotations...

About a month ago I reached out to my congressman's office hoping to talk to him concerning a serious drug shortage. Representative...

Last weekend was college graduation for many in the Class of 2023 and what a weekend it was. It was said over and over that this was...

I will warn you, our oldest is graduating from college in a couple of weeks and I may appear I am going off my rare disease track a tiny...

I took a long weekend away from writing, but not away from rare. Those of us with a rare disease or who love someone with a rare disease...

I have shared that my reaching out to the media and legislators has gotten me as far as the White House. But believe me, this is not...