Rare Genomics Institute Launches 2017-2018 BeHEARD (Helping Empower and Accelerate Research Discoveries) Rare Disease Challenge

researchers, who traditionally have difficulty attracting funding, grants of cash and the latest life science innovations and technologies. This unique crowdsourced biotechnology competition allows companies to contribute their technology to make a difference for the rare disease community.

In the 2018 BeHEARD Challenge, in addition to BeHEARD’s usual competition open to all rare disease proposals, Rare Genomics is collaborating with the INADcure Foundation, whose mission is to support the development of treatments for INAD (Infantile Neuroaxonal Dystrophy) to award $100,000 total in INAD Discovery Grants.

INAD is lipid storage disorder that occurs due to the lack of a certain enzyme. The result is an accumulation of lipids in nerve endings that causes progressive damage. The symptoms of INAD usually start to appear between the ages of 6 months and 2 years. A common pattern in young children is the steady loss of previously acquired skills, and mental and physical ability. Most children with INAD do not survive beyond the age of ten, and there are currently no effective treatments for the disease, although there has been some promising initial research. “BeHEARD and INADcure hope that by offering the Discovery Grants, we may be able to increase research on INAD, which has potential for treatments, but has difficulty attracting research and funding due to the relatively low number of sufferers,” says Danielle Fumagalli, BeHEARD Director.

Partnering with INADcure and life-science technology companies, we have over $500,000 of cutting-edge technologies and cash grants available for rare disease researchers to apply for. The prizes include custom mouse models, bioinformatics analysis software, and much more.

Who is eligible to apply?

• Researchers at non-profit institutions, universities, or academic laboratories.
• Rare disease advocacy groups, foundations, and families.
• For-profit companies may apply in collaboration with non-profit patient
  advocacy groups or universities.
• Your project must involve a rare disease (as defined by the NIH; https://rarediseases.info.nih.gov/).

Requirements:

Applicants are required to provide the following information:

• CV of applicant(s)
• Contact information
• Summary of your research, including background, significance, hypothesis, and specific aims
• Winners are required to provide a progress report on their research quarterly after receiving the prizes. The progress report form will be provided by RG.

We invite you to explore the BeHEARD website in depth to learn more about the specific technologies available and how to apply for this year’s competition

A full list of last year’s BeHEARD winners can be found on the RG website:

https://www.raregenomics.org/contest-updates

For more information about the 2018 BeHEARD challenge, please visit:

https://www.raregenomics.org/beheard-competition/

For more information about the 2018 BeHEARD challenge prizes, please visit:

https://www.raregenomics.org/technology-prizes/

More information on INADcure Foundation:

https://inadcure.org/

About the Rare Genomics Institute

The Rare Genomics Institute is an international 501(c) 3 non-profit that makes cutting edge research technologies of genome sequencing, physicians and scientists around the world accessible to rare disease patients. Rare Genomics helps families source, design and fund personalized research projects for diseases not otherwise studied helping rare disease patients find hope for a cure. By providing an expert network and an online crowdfunding mechanism Rare Genomics works alongside patients and their families, providing them with the necessary tools, knowledge, and connections so that they can better understand the cause of their disease.

For further information on Rare Genomics, please visit https://www.raregenomics.org.