Publication date: 3 Mar 2020
“There are 7,000 known rare diseases affecting over three hundred million people worldwide, but treatments are available for less than 5 percent of those diseases,” explains Danielle Fumagalli, BeHEARD Program Director. “Often, this is not due to any inherent difficulties in developing successful therapies, but a severe lack of both private and public sector funding to conduct research and clinical trials for diseases that affect a relatively small number of people. The BeHEARD competition seeks to overcome this gap by partnering with biotech companies to put critical resources into the hands of those seeking solutions to rare disease.”
Since the initiative’s start in 2012, BeHEARD has provided over $2.2 million in grants to support rare disease researchers. BeHEARD’s 2020 prizes will include more than $85,000 of sponsored cutting-edge technologies and services from top scientific companies, such as vectors from Addgene, multiplex panel design software from DNA Software Inc., antibodies from Novus Biologicals/BioTechne and mouse models from Taconic. The competition is open globally to researchers, foundations, or anyone whose idea is constrained due to limited resources. Families with a child afflicted with a rare disease can be connected with a network of academic researchers to develop research proposals tailored to advancing treatments for their child’s disease. Applications are simple and can be accessed on the BeHEARD website: https://www.raregenomics.org/beheard-competition/.
Research proposals will be evaluated by an expert panel of scientists from both academia and our technology partners. “Evaluation of the proposals is not based on attractive scientific hypotheses, the key factor we always consider is: Will this research make a real impact to advance rare disease treatments?” says Arvin Gouw, Ph.D., Vice President for Research and Development. “Too often, rare disease patients are left undiagnosed and untreated through years of going in and out of hospitals. Our goal is to bring hope of a cure to everyone.”
About the Rare Genomics Institute
RG is a non-profit that makes cutting edge research technologies and experts accessible to rare disease patients. By providing an expert network and an online crowdfunding mechanism, and partnering with top medical institutions, such as Harvard, Yale, Johns Hopkins, and Stanford, RG helps families fund and design personalized research projects for diseases so rare that no organization exists to help. Ultimately, RG aims to expand on its current genome sequencing-focused approach to enable community funding to support whatever type of research is necessary to get closer to rare disease therapeutics. For more information about the Rare Genomics Institute, visit https://www.raregenomics.org.