All articles from Nisha Trivedi
Channeling My Rare Disease Patient Experience Into Action and Understanding
Nisha Trivedi is a resident of South San Francisco, CA and was born with Epidermolysis Bullosa (EB). EB is a rare genetic disorder in which a key protein that binds the layers of skin together is missing. EB patients have extremely fragile skin and recurrent blister formation that can result from even the most minor friction or trauma. Nisha is a rare disease advocate and has been advocating for EB at San Francisco Rare Disease Film Festival, through various advocacy groups, social media—and has shared her story with members of Congress to encourage them to support policies that benefit rare disease patients.