-- The competition is open globally to foundations, researchers, and doctors –
Washington, D.C. December 15, 2016. The Rare Genomics Institute (RG) announces the BeHEARD (Helping Empower and Accelerate Research Discoveries) Initiative, an annual rare disease science challenge providing technology grants for rare disease research. The RG-hosted contest is aimed at accelerating rare disease research and offering new options for millions of patients suffering from ailments that lack effective treatments.
“Three hundred million people worldwide suffer from over 7,000 known rare diseases, but treatments are available for less than 5 percent of those diseases,” explains Danielle Fumagalli, BeHEARD Program Co-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 $1.85 million in grants to support rare disease researchers. BeHEARD’s 2016 prizes will include more than $650,000 of sponsored cutting-edge technologies and services from top scientific companies, such as vector constructions from Cyagen Biosciences, mouse models from Charles River Laboratories, the Jackson Laboratory, and Taconic Biosciences, drug repositioning services from Biovista, and drug discovery informatics from Collaborative Drug Discovery. 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.
Research proposals will be evaluated by an expert panel of scientists from both academia and our technology partners. “In the evaluation process, the key factor we always consider is: Will this research advance rare disease treatments?” says Arvin Gouw, Ph.D., BeHEARD Co-Director. “Too often, rare disease families spend years seeking a diagnosis, only to learn that there is nothing that can be done. 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 our website.
Rare Genomic Institute Announces Rare Genomics Task Force (RGTF)
Washington, D.C. December 15, 2016. The Rare Genomics Institute (RG) has announced a new division – Rare Genomics Task Force (RGTF). It will be tasked with providing scientific information and support for patients with rare diseases. These efforts include but are not limited to conducting research reviews, writing reports for patients, identifying renowned experts who can help with projects, and connecting experts with rare disease patients. RGTF recently started a free and publicly accessible platform that is currently running through email communication.
In the US, around 20 million people suffer from rare diseases. Unfortunately, we are only in the very early stages of diagnosing and treating the majority of these rare diseases. As such, patients are left with limited information regarding their condition. As patients who have rare diseases have increasingly made email inquiries, the RGTF initiated a better and faster way of communication with patients about their diseases with an online platform through which they can directly submit questions. Our analysts aim to answer their inquiries quickly, usually within 10 business days.
RGTF provides an innovative and convenient way of helping patients with rare diseases. Compared to conventional email communication, this application platform (http://www.raregenomics.org/rgtf) will expedite the spread of knowledge as well as better satisfy the needs of patients. With trained scientific analysts and established connections with experts in diverse areas of rare diseases, the RGTF provides advanced scientific support to help patients.
Please do not hesitate to contact our experts with inquiries at http://www.raregenomics.org/rgtf
About the Rare Genomics Institute
RG is a non-profit that makes cutting edge research technologies and experts accessible to rare disease patients. Partnering with top medical institutions, such as Harvard, Yale, Johns Hopkins, and Stanford, RG helps design personalized research projects for diseases so rare that no dedicated organization exists. By providing an expert network and an online crowdfunding mechanism, RG helps families source, design, and fund personalized research projects in diseases not otherwise studied. Ultimately, RG aims to expand on its current genome sequencing-focused approach to enable community funding to support any type of research that leads to rare disease therapeutics.
For more information about Rare Genomics Institute, visit http://www.raregenomics.org.
