Rare Disease Challenge Awards Released by Assay Depot and Rare Genomics Institute

March 9, 2013

In recognition of Rare Disease Day, Assay Depot and Rare Genomics Institute (RGI) announced today the winners of the first ever Rare Disease Science Challenge: BeHEARD (Helping Empower and Accelerate Research Discoveries). In total, more than $500,000 worth of research services will be awarded to study 26 different rare diseases, ranging from Alkaptonuria to X-linked intellectual disability (XLID). In addition, 10 finalists have been selected for a $10,000 cash prize, and the final winner will be determined by online public voting.

“Despite a significant public need, rare diseases are often overlooked,” said Jimmy Lin, President of the Rare Genomics Institute. “We join in the global celebration of Rare Disease Day, by raising awareness and providing some much needed resources to support some of the most innovative work in the area of rare diseases.”

Rare diseases affect more than 25 million Americans, yet less than five percent of the 7,000 known rare diseases have treatments available. The BeHEARD Challenge encourages non-profits, academic researchers, rare disease advocacy groups, families of rare disease patients and for-profit companies to collaborate in their collective mission to advance rare disease research.

The awards include: creating a mouse model to study Sanfilippo Syndrome—which results in severe neurological deterioration in children, providing DNA sequencing to discover new genes that cause Osteogenesis imperfecta, providing tools and reagents to discover new drugs for Charcot-Marie-Tooth—which results in nerve degeneration and muscle loss. For a full list of winners and additional details on finalist contest submissions, please visit

“Our mission is to empower scientists and the rare disease community, and break down the longstanding barriers to conducting drug discovery research,” said Kevin Lustig , CEO of Assay Depot and platinum sponsor of BeHEARD. “This competition furthers that mission by advancing the fundamentals of the open science movement, which is the key to innovation and will be a large part of the industry’s future.”

Read more at Assay Depot.

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