Rare & Undiagnosed Network

October 18, 2018 10:14 am No Comments 11

RARE TAMU is a student organization at Texas A&M University that works to spread awareness of RARE diseases.

They are a National Organization for Rare Disorders (NORD) Student Chapter.

Ava and Gina had the blessed opportunity recently to share their journey with them!

“At this week’s RARE TAMU meeting we had the pleasure of hosting Gina Szajnuk, Co-Founder and Executive Director of the Rare & Undiagnosed Network RUN, and her oldest daughter, Ava, who shared their experiences living with an undiagnosed rare disease. Their journey as a family navigating through their “diagnostic odyssey” was both inspiring and eye opening. For myself, and I’m sure other future physicians, we don’t often think about what we won’t know how to diagnose after medical school. However, these are some of the most important cases that we will encounter, as the bedside manner we use and the trust that we put in our patients will be major factors in determining our character as physicians. It is hard to deal with these cases, but it is even harder being a family desperate for answers and to feel dismissed by those who are supposed to help you. I know that as I move forward in my journey to becoming a physician that I will keep in mind the Szajnuk’s story and will do my best to provide the best care possible to other families living these battles. Thank you again Gina and Ava for taking the time to share your story with us! Texas A&M University NORD Student Leaders“

– Samantha Sliva