About Rare Disease Club - Spreading Awareness About Rare Diseases

OUR COFOUNDERS

At 15 years old, Parnika and Samhita co-founded Rare Disease Collective (RDC), an initiative to raise awareness about rare diseases in their community. The idea came after an English class discussion, where their teacher shared a personal story about a family member who had passed away from a rare disease. The story highlighted how a lack of research and public knowledge had delayed diagnosis and treatment. Realizing how common this issue actually was—and how little people knew about it—they decided to take action.

CoFounder: Parnika Khatri

Parnika, who had always been drawn to health and science topics, was especially struck by how preventable the situation might have been with more awareness. She started reading more about how rare diseases often go unnoticed or misdiagnosed due to limited resources and attention. Wanting to help change that, she brought her ideas to Samhita and began thinking about ways they could educate people their age about the issue.

CoFounder: Samhita Ramesh

Samhita, with a strong interest in advocacy and communication, immediately connected with the cause. She saw how easily important health issues get overlooked, especially ones that don't affect large groups. Inspired by the idea that students could lead meaningful change, she worked with Parnika to create RDC as a space for spreading reliable information and encouraging conversation. Together, they combined their strengths to launch a platform that helps others learn about and engage with the topic of rare diseases.