Rare Genomics Institute to Provide Clinical Whole Genome Sequencing to Children with Rare and Undiagnosed Genetic Diseases through Partnership with Illumina

Washington, D.C. December 1, 2016.  Rare Genomics Institute (RG) today announced a partnership with leading genomics company Illumina Inc. (NASDAQ: ILMN) as part of their iHope program, which provides clinical whole genome sequencing to selected children affected by rare or undiagnosed diseases. 

“My team and I have journeyed alongside many families as they try to access these technologies to help their children find a diagnosis. Being part of the Illumina iHope program will help us bring whole genome sequencing to more families,” said Romina Ortiz, MHS, Co-founder and VP of Patient Advocacy and Policy, who is leading this operation for Rare Genomics Institute.

Since 2011, RG has been helping rare disease patients access genomics to find a diagnosis - connecting them with over 20 research institutions and companies around the world and helping them find funding - either through industry sponsors, academic grants, medical insurance, or crowdfunding.

“We are excited about the Illumina iHope Program, as it allows us to bring cutting-edge technologies to more families facing rare and undiagnosed disease, while removing some of the financial and operational barriers to accessing whole genome sequencing,” said Jimmy Lin, MD, PhD, MHS, Founder and President of Rare Genomics Institute.

Families facing rare and undiagnosed disease experience many challenges as they strive to end what are too often years-long diagnostic odysseys to identify the cause of their child’s ailments, while caring for a child with complex medical needs and an uncertain future. Many do not have access to whole genome sequencing, which presents hope for a diagnosis either because they do not have access to physicians able to order and interpret these tests, or due to financial barriers. The iHope program aims to address these challenges by providing whole genome sequencing to patients with medical and financial need selected by RG and other program partners.

Full details for eligibility and selection criteria are available at http://www.raregenomics.org. Applications will be accepted on a rolling basis.

About Rare Genomics Institute
RG is a 501(c)(3) non-profit that makes cutting edge research technologies and experts accessible to rare disease patients. Partnering with top medical institutions, RG helps custom design personalized research projects for diseases so rare that no organization exists to help. 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 support for whatever type of research is necessary to get closer to rare disease therapeutics.

For more information about Rare Genomics Institute, visit http://www.raregenomics.org.
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