Rare Diseases have always existed. Prior to modern medicine and technology many more were mistreated, not treated and fatal than they are...

It may appear that I am digressing from speaking about rare disease for a post, but believe me this post is as relevant as any other post...

Many people see today's date, 3/14. and think Pi, or pie... I did some looking and according to www.nationaldaycalendar.com in addition...

The diagnostic journey for someone with a rare disease averages 5+ years. And I purposefully used the title "Our" because it goes beyond...

I talk quite a bit about being a rare mom, and in many ways for the last 7+ years it has defined me. But the reality is that for the last...

Let's start at the beginning of my rare journey, and the making of a rare mother's heart..... Fall of 2015 was when pieces were starting...

My first introduction to a rare disease organization was most likely in early 2016. I may not be sure of the date, but I know who it was...

As a young stay at home mom to a preschool boy and a toddler boy, I was busy and I was trying to the best mom to both my boys that I...

Every year on this last day of February we, in the rare disease world, celebrate Rare Disease Day. Why on the last Day of February, you...

Today is the day!! Today, February 28th is Rare Disease Day!! And you, my friend, are among the first to know my secret. I have kept this...