According to the NIH, about 25 to 30 million people in the us alone live with rare diseases.
That's nearly 1 in 10 individuals – yet each one of these unique voices feels isolated and unheard.
Beyond Rare empowers people through connection, advocacy, and support, or as we like to say...
connecting rare strands--one voice at a time
Our Mission
empowering people through connection, advocacy, and meaning
Personalized patient forums
With our unique, personalized forums, patients can finally voice their distinct experiences.
Educational rare disease directory and news center
With over 7,000 known rare diseases in the US alone, finding the latest information can be difficult sometimes. Our website's easy access to the most up to date resources ensures your search for information is quick and simple.
Peer support programs
Having a rare disease can feel stressful and isolating at times. Our peer support programs are specifically designed to alleviate patient stress and create a stronger community.
Distinct advocacy, fundraising, and policy initiatives
Designed by one rare disease patient for another, our special advocacies are tailored to bring our community's real experiences to light and design a better world for all.
Our
Story
Aashriya Vasamsetti
Founder, Beyond Rare
Since the young age of three, I've been suffering from the rare, genetic mutation of McCune-Albright Syndrome. Throughout various surgeries and injuries, I constantly felt isolated and unseen, wishing I could find people who could share the same pain. Though I felt alone, I wanted to ensure no one else would ever have to feel that way, making it my life's goal to help alleviate the hurt for those similar to me as much as possible. Beyond Rare is a tool to make sure you or your loved ones with a rare disease feel more supported, represented, and seen, not just a website.
”Every rare strand, each uncommon gene, and every unique story has meaning. Bonded by special lives, let's raise our voices together.
✦ Beyond RareFurther our patient support by becoming a free member today. Whether you're a rare disease individual seeking connection, a family member or friend looking out for your loved ones, or just a curious individual trying to help our cause - all of our members are greatly appreciated.