Giving Rare Disease Day the Credit that it Deserves

Giving Rare Disease Day the Credit that it Deserves

Giving Rare Disease Day the Credit that it Deserves How do you give Rare Disease Day the credit it deserves? Did you know that you can change the way people react to you and your past life experiences using just 3 simple digits? It’s called a FICO/Credit score and it is either dreaded, fiercely protected[…]

Preston Is Truly One Of A Kind

Preston Is Truly One Of A Kind

  Preston Is Truly One Of A Kind A disorder is considered rare when fewer than 200,000 people in the United States has the condition. Some of us with rare disorders go to the emergency room when something goes wrong, it is after office hours and we do not have a choice, but when we[…]

Rare Disease Day: Emi’s Courage

Rare Disease Day: Emi’s Courage

 Emi’s Courage When we receive letters from the parents of children with chronic and often rare diseases, the first thing parents tell us is about the strength and courage their children have. When we learned of Emi’s courage we knew we were learning about someone special. Jules daughter had a rare disorder and has often[…]

Rare Disease Day

Rare Disease Day

Chronically Awesome: A Proud Rare Disease Day Partner “With research, the possibilities are limitless” Press Release: Today Is Rare Disease Day 2017: Today is #RareDiseaseDay 2017! Today, with events taking place in over 90 countries all around the world, we hope to raise more awareness than ever for rare diseases! With the theme of research,[…]

Resolution To Take Baby Steps

Resolution To Take Baby Steps

Resolution To Take Baby Steps “Resolution To Take Baby Steps” is a guest post by our founder, Jules Shapiro. Originally posted on WhatTheJules.com, this post is not just a blog, it is an idea for a creative art project!   Happy New Year! I hope that you had fun last night. Making a resolution for the coming[…]

Misdiagnosed With Addiction by Patti

Misdiagnosed With Addiction by Patti

My Life With Chronic Pain After Being Misdiagnosed With Addiction By Patti A. I am writing this article from the perspective of being a patient who has a Chronic Pain Condition as well as having an unwarranted, Doctor imposed label of “Addiction”. What no one seems to really understand is that my Chronic Pain Condition is[…]

Writing Heals

Writing Heals

Writing Heals Originally published on WhatTheJules The Chronically Awesome Foundation was founded, in part, on the basic concept that writing heals. We believe that on the whole, art heals and that writing is one very powerful part of that. Everyone has a story to tell. We do not have to be great writers. We do not[…]