Merging the metaverse and the rare disease community: join the conversation

22 September 2022

#RARETech column by Sean Gordon

Introduction to the RareVerse blog

When Facebook changed its name to Meta, it signalled a sea change in how people and businesses will communicate over the internet. The social network bet that current Web 2.0 technologies, with 2D platforms, will be replaced by a 3D-like immersive experience—the metaverse.

Mark Zuckerberg said in an interview on CNBC:

“Our vision is to attract about a billion people to spend a few hundred dollars in the Metaverse, and they’ll buy digital goods, digital content, digital things to express themselves, whether it’s clothing for avatars, or virtual homes, or a mobile phone.”¹ The early adopters in the metaverse space are fully immersive games with names like Axie Infinity, Decentraland and Sandbox, to name a few.”²

It was also popularised by the movie, Ready Player One.³ However, the metaverse will extend far beyond its current scope. The investment bank Citi has said the market for the metaverse could be worth an eye-popping $8–13 trillion by 2030 and have five billion users.⁴

As the earlier web was transformed by mobile, the next evolution will be blockchain-based, decentralised and immersive, blurring the lines of physical and digital.

With the fusion of the metaverse, the rare disease ecosystem will be transformed in many areas, including:

better patient data ownership
better drug development via higher patient participation
creating expanded experiences for patients with limited mobility
the metaverse’s immersive experience stimulates better ecosystem integration
better telemedicine experiences
louder and equitable patient voice
better therapies, physical, psychological and occupational

The magnitude of rare diseases

There are 10,000 rare diseases affecting around 3.5–5.9% of the world’s population (~263 to 466 million). This figure disproportionally impacts children, with cures for only 5% of the sufferers. The economic impact in the US alone is truly staggering. The EveryLife Foundation (one dedicated to Rare Diseases) estimates it to be $997 million per year in the US alone,⁵ divided in half between direct and indirect costs.

An overwhelming number of rare disease patients are defined as “disabled”. A European survey found that 72% of people with rare diseases suffer from motor and sensorial function.⁶

The metaverse technological platforms will offer solutions to improve their lives.

What is the metaverse?

First, what the metaverse is not. The metaverse is not a digital currency like Bitcoin and other blockchain-based decentralised peer-to-peer money (which have lost a great deal of value recently).

There are numerous definitions of the metaverse. The following is from McKinsey & Company:

“I (Cathy Hackl, foremost futurist, metaverse expert) believe it’s a convergence of our physical and digital lives. It’s our digital lifestyles, which we’ve been living on phones or computers, slowly catching up to our physical lives in some way, so that’s full convergence. It is enabled by many different technologies, like AR (augmented reality) and VR (virtual reality), which are the ones that most people tend to think about. But they’re not the only entry points. There’s also blockchain, which is a big component, there’s 5G, there’s edge computing, and many, many other technologies.”⁷

For many, the metaverse is perceived as aspirational and a function of numerous technical pieces needed to fall into place in the future. However, there are many commercial activities currently underway which exist in the metaverse. These are not limited to virtual reality gaming and spread into other areas of economic life. A survey conducted by McKinsey & Company in February 2022 yielded interesting insights about the future of the metaverse:⁸

“The Khronos Group is an open, non-profit, member-driven consortium of over 150 industry-leading companies (including Google, Intel, Meta, Microsoft).”⁹ It is creating a metaverse standard which will unify and drive adoption throughout the economy and the healthcare world.

“Khronos announced a new collaborative body called the Metaverse Standards Forum (or MSF)—not a new standards organisation, but a ‘venue for cooperation’ between existing standards organisations and companies—to help develop new tools for the metaverse.”¹⁰There are numerous definitions and many of the boundaries are yet unclear. However, the following from McKinsey offers an excellent overview¹¹:

The metaverse encompasses immersive environments, often (but not always) using virtual- or augmented-reality technology.
The metaverse is always on and exists in real time.
The metaverse spans the virtual and physical worlds, as well as multiple platforms.
The metaverse is powered by a fully functioning virtual economy, often (but not always) built on cryptocurrency and digital goods and assets, including nonfungible tokens (NFTs).
The metaverse enables people to have virtual identities, presence and “agency”, including peer-to-peer interactions, transactions, user-generated content, and “world-building.”

The merging of the metaverse and rare disease

In forthcoming blog posts on therareverse.com we will dive into greater detail about how aspects of the metaverse will benefit the rare disease community.

freedom from physical limits through an immersive experience
building and living in the metaverse’s digital spaces
engaging in digital commerce
better communication via digital “presence” far superior and more engaging than today’s Zoom meetings
controlling valuable digital patient data
and many more…

We invite you to join us on this journey!