What other great way is there to start off the new year off than being featured in two…no, three brand new news articles? RGI is so honored to be recognized in The Huffington Post, Bloomberg, and GenomeWeb! Thank you all for helping to spread our message of hope out to rare disease patients and their families!
Huffington Post: Finding a Home for Orphan Diseases
“So here we are, with about 7,000 orphan genetic diseases affecting over 200 million people worldwide. Even though it sounds like a good portion of the population, the NIH only devotes a small portion of its yearly budget to the study of these rare diseases. Traditionally, the best hope to further the study and research of these types of illnesses has been parent groups and one-off grant projects. Now, though, there is a new effort that may be an invaluable aid to those who are afflicted with and those who study orphan diseases…” [Read more to learn how RGI intends to change things around]
“A decade after the first draft of the human genome was published, hospitals and clinics are using DNA sequencing to generate better treatments and diagnoses for patients with rare childhood diseases, cancers and other mysterious conditions. Using new technology that can effectively print out an individual’s genome — the instruction manual for making all the body’s cells — doctors are examining individual components, called bases, to slow intractable cancers and treat one-of-a- kind diseases in children.” [Read more to learn how our first patient, Maya, found us]
By partnering with genomics research institutions and raising money through a crowdsourcing model, the Rare Genomics Institute is helping to ensure that patients who have undiagnosed diseases can have their exomes sequenced.
Jimmy Lin, the president and founder of the Institute and a research instructor in the Genomics and Pathology Services division at Washington University’s School of Medicine, told Clinical Sequencing News that the inspiration for the institute came about a year ago when he met a family with a child who had a rare disease. [Read more to learn more about one family's experience with RGI]
Updated: January 27, 2012