January 26, 2022
Hi, my name is Shivani Vyas and I am a high school senior in Atlanta, Georgia. I recently started at Cure Rare Disease as a Development Intern, which I’m super excited about!
I do not have a rare disease myself, but my grandmother was affected by a very rare form of pancreatic cancer. During that time, it was difficult to find resources and navigate the diagnostic process, while also deciding between multiple treatment options.
As I began to learn about the rare disease community, I noticed that many patients were experiencing similar situations and I wanted to create a change. So, I decided to create The Rare Disorder Podcast to help elevate rare disease patient voices and interview experts/researchers in the field. You can listen to my most recent episode here. I have podcasted with authors of rare disease books, founders of rare disease organizations, rare disease advocates, and more—all types of individuals who are combining their passions with rare disease advocacy!
Through my Meet a Fighter series, I strive to empower patients in their identity through the use of storytelling. In my opinion, people will always remember stories and experiences over medical statistics and terms – whether that is a relation point that resonated with them, their struggle with receiving care, or anything else. And when patients share their experiences, it opens people’s hearts to the situation, and enables them to attain a first-hand experience.
Living with a rare disease can be quite isolating, and many people in the community search endlessly for a story that resembles their own. This is why it is almost essential to speak up and voice their story. I encourage and remind patients that their story matters, and could be the answer someone is looking for – the strength, diagnosis, or support. Plus, they may stumble upon a connection point, or discover resources that they never knew existed.
I have seen our community bond, persevere, and connect through storytelling. While I’ve noticed numerous trends among patients’ journeys, each person provides a unique perspective, and I am constantly learning.
While I was podcasting, I noticed many trends and patterns among patient stories. For example, there were many issues of health inequity, such as many patients discussing their long travels across state lines for care, their rare disease not having an ICD code, and the lack of FDA-approved treatment options. This was very interesting and I wanted to learn more, so I decided to get involved with rare disease legislative work/policy as a Young Adult Advocate through Rare Disease Legislative Advocates.
Today, The Rare Disorder Podcast has 5k listeners, 1k followers, and 36 episodes, and has been in the top 100 science podcasts. I have also won many awards for my work.
Apart from my podcast, I speak at conferences such as Global Genes, NORD, and more, take part in legislative advocacy, and create resources for patients. And through The Rare Disorder Podcast, I’m honored to have created a place for rare disease patients, wherever they are in the world, to share their story.
Outside of my rare disease work, I’m a Red Cross Youth state officer and am very engaged in my school through clubs/organizations, and for fun I like to do yoga (I am currently getting my RYT 200 Certification), explore national parks and the great outdoors, visit new food spots/coffee shops, and hangout with my friends!
Once again, I am so excited about the work I am going to be doing at Cure Rare Disease - I am looking forward to learning and contributing to its mission!