Real World Data: a Rare opportunity

Our Mission

MyRareData exists to help patients make use of their healthcare data to reach their clinical and financial goals.

Why it matters

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


Rare patients and their families, often alone and with few tools, have long fought to drive and accelerate research.


By taking control of the Real World Data they generate, rare patients now have an opportunity to gain leverage and reach their goals faster.

What we are doing about it

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


1) Proliferate the use of digital health  tools to help rare patients


2) Help patients participate in new  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