There was a child with an unknown illness and no diagnosis in sight. It was a grandson to her and a nephew to him. Turns out it was a rare disease with less than 75 cases worldwide!
Who knows about it? How do we treat it? What’s the future? - So many questions...
The grandmother turned to colleagues and connections in the healthcare industry, and the Uncle delved into the world of tech to find a solution.
Together they created Know Rare.
A tool connecting rare disease patients with research and experts
Education hub providing resources for rare disease patients
Community stories with insights to help on your rare disease journey
CEO & Co-Founder
Nina has been working in healthcare marketing for many years, and has worked with scientists and researchers in many different rare diseases. After her grandson was born with a rare disease, friends who also had family members with a rare disease contacted her to find out how to get access to researchers and clinical studies. After trying to help, she realized how difficult it was, which was why she founded Know Rare.
COO & Co-Founder
Jake’s experience in Digital Strategy at Omnicom Media Group provided the skillset to build digital programs in rare disease. His creativity and knowledge of tech & programming led to the development of the Know Rare website and research platform.
