About

Students for Rare is a club where we educate and spread awareness of rare diseases with the goal to improve and better the lives of individuals living with rare disorders and their families and caregivers. Although this club is separate, it is a program in partnership with the National Organization for Rare Disorders (NORD), a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. This also allows us to:

  • Network with other students around the country

  • Be first in consideration for scholarships

  • Attend special webinars and student meetings

  • Promote our own events on their social media channels

For more on the Students for Rare program at NORD, click here.

Why I Started This Club- Keagan McGuire

Hi - I'm Keagan. Students for Rare is a cause that hits really close to home for me. Two of my three siblings were diagnosed with a rare disease that has detrimentally affected their own lives as well as my own. My brother Conor was diagnosed after he died with Primary Ciliary Dyskinesia (PCD). No one understood what was happening or how to help him, but as strong as he was, he was unable to fight pneumonia. PCD wasn't even understood to be something that could lead to a life threatening situation at the time (13 years ago). This is where advocacy and education comes in.

My other brother is fortunately doing well now, but his rough start to his life didn't make it seem that way in the beginning. He was born with Beckwith-Wiedemann Syndrome (BWS) and spent 45 days in the neonatal intensive care unit (NICU) after he was born. They had to surgically (1) repair his midsection as a small part of his internal organs developed in a sac on the outside of his body and (2) reduce the size of his tongue because he couldn't get enough oxygen. Fortunately, he has not experienced other 'hallmarks' of BWS including having one side of the body grow faster than the other, aggressive childhood cancers, etc. He did come home on a tube and then had extensive ultrasounds to monitor for cancer every three months until he was 9 years old. At the moment, he is a happy striving 12 year old but his original path to get there wasn't easy - and there's a lot of research that has yet to be done for BWS, like all other rare diseases. We don't know what we do not know.

I recognize that we were also fortunate to have access to insurance and the resources to medically take care of him - and to discover why my other brother had which was not 'standard' procedure, without a mountain of debt. There is no cure to either condition, and very few treatments. Rare disease advocacy is so important to me because I have seen what it can do, and it affects so many people - so many more than even I realized. Raising awareness is the single-handedly the important thing that WE can do to help ALL rare diseases. I would love for you to join me on this journey.