Communication is the Key to Patient Centricity

The RareVerse Creates a Lifelike Communication Experience

Our Vision

Today’s Rare Disease Patient Organizations (RDPOs) have numerous communications and data needs supporting their ecosystem. Zoom or other video chat platforms don’t provide the required connection.

The RareVerse’s lifelike, avatar-based Metaverse technology provides movement and social interaction to increase mobility for people who use a mobility aid such as a wheelchair, cane, walker, etc.

Patients can interact with their friends and colleagues as well as Researchers, Industry and Government, freed from the limits of little video cubes.

The RareVerse offers five rooms to facilitate communication. 


A large space to deliver informational meeting to the entire RDPO, Science Committee presentation and training programs.


Places for Members to casually, sit on the floor, play games, talk, and interact in a cool and fun setting. Builds RDPO connection and engagement. 

Movie / Video Theater

A space available to play video files or “YouTubes” where people can meet communally and experience a “Watch Party” like experience. People are pared off and can speak with each other and others around cannot hear.

Meeting Rooms

Places for Members to conduct private group meetings, sit on the floor or at a desk. Write on the white board to capture your thoughts.

Library / Digital Resource Center

Places for Members to casually, sit on the floor, play games, talk. A place to gather documents, important to your RDPO. They are accessible only to your members. In addition, you can add links to public resources on the Internet. It is constructed like a traditional library, where each book links to the private or public resource.

Why Partner with Us?

We offer five unique spaces each designed to meet the diverse needs of the RDPO.

About Us

Our roots are in Rare Disease. Sean Gordon, our founder, is a Patient with an adult onset indication, Adult Polyglucosan Body Disease (APBD). He has worked passionately with the Community and is a co-founder of World Rare Advocacy Partnership (WRAP). He writes a quarterly column, “RareTech”, the intersection of Rare Disease and Technology for Rare Revolution E-Zine. He is a graduate of EURODIS summer program.


Thank you for your time. 

Please send a note if you need further information.