Why Rare Disease Insights?

About Me:

As of right now, I am a Junior in high school, and I just recently founded a NORD Students for Rare Chapter at my school. As for my other involvements, I am thoroughly interested in medical sciences. I applied to the math and science academy at my school with the intent of learning more about science and medicine. I joined the Biology Club and the Chemistry Club, and I am currently President of both. However, after two years of getting acquainted with my school, I decided there was more I could do to drum up support. That’s how I discovered NORD. Well, to be honest, I just started googling some stuff. I stumbled across NORD and fell in love with them right away. Their goal of spreading awareness and raising funds and support for conditions that often fly under the radar is incredibly inspiring.

Why This Blog:

Earlier, I mentioned that I began the NORD Students for Rare Chapter at my school. So you might be asking yourself, “Well, What is NORD?” You may ask. Well, NORD stands for the National Organization for Rare Disorders. NORD itself is a nonprofit health agency that spreads awareness and information on rare disorders. Now you might be wondering, “What constitutes a rare disorder?” To answer that, a rare disorder is any disease or condition that affects fewer than 200,000 Americans. Well, even after finalizing the establishment of a student chapter at my school, I still didn’t feel like I was doing enough for these diseases and disorders I’d come to learn so much about. I decided that there had to be another way for me to further awareness outside of my school’s academic community. After some brainstorming and consulting my parents (I am still a kid, after all), I determined that the best way to reach the most people would be through a blog. Though this is only the first post of this blog, I have high expectations for what is to come of it.

What You Can Expect:

I intend to publish one post a week that highlights a specific rare disease or disorder. These weekly posts will coincide with the disease or disorder covered in the meetings at my school’s chapter. Also, if you or a friend or a loved one have a rare disease or disorder that you would like to see highlighted in a post, you can comment on the post and add any particular information you’d like to see talked about in said post, and I’ll do my own research to most accurately speak about that disease or disorder. Or if you seek any further involvement, you can feel free to reach out to me with a personal testimony on you or a loved one’s experience with a rare disease/disorder, and I would absolutely love to incorporate it into the post for that week!

I look forward to hearing any responses!

Let’s keep spreading awareness – Lily