Real World Data: a Rare opportunity

Our Mission

MyRareData exists to help rare patient groups raise money through data.

Why it matters

Rare diseases impact 1 out of 10 people globally and only 5% have an approved cure.


While rare patients fight hard and often with few tools to improve their quality of life and drive research for a cure, their data is critical to an industry that spends $20B annually on healthcare data analytics.


By taking control of the real world data they generate, rare patients now have a new way to gain leverage and reach their goals faster.

What we are doing about it

We empower patients and patient groups with data in two ways: 


1) Proliferate the use of digital health tools to help rare patients manage their conditions.


2) Help patient groups participate in the business models enabled by the digital health economy.

How do we do it?

Sign up to hear more about the work we’re doing with rare patient groups