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