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The Rare Genomics Institute celebrates World Rare Disease Day 2014The Rare Genomics Institute celebrates World Rare Disease Day 2014

Posted By Karen Eng

Today is World Rare Disease Day – an event launched in 2008 to galvanize public awareness and research momentum for rare diseases. In the United States, a disease is considered rare if it affects fewer than 200,000 people. Yet there are more than 7,000 known rare diseases. This ratio means that there’s little funding for […]

Health

Infographic: It’s Rare Disease DayInfographic: It’s Rare Disease Day

Posted By Karen Eng

What do JFK, Venus Williams and Dan Ackroyd all have in common? All have been diagnosed with a rare disease. Today is Rare Disease Day, and here at TED2013, TED2012 Fellow C Jimmy Lin is marking the occasion by awarding $500,000 worth of research to help 26 different rare diseases, and launching a striking infographic […]

Health

Rare gifts: Fellows Friday with C Jimmy LinRare gifts: Fellows Friday with C Jimmy Lin

Posted By Karen Eng

Millions of people, many of them children, suffer from “orphan” diseases — illnesses so rare that no infrastructure exists to investigate or treat them. Now C Jimmy Lin’s Rare Genomics Institute puts hope and empowerment back in patients’ hands by connecting them with researchers, doctors and community support, and a crowdsourced funding platform. What is […]

Health

The Rare Disease Challenge: A $400K contest for researchThe Rare Disease Challenge: A $400K contest for research

Posted By Shirin Samimi-Moore

In July, TED Fellow Jimmy Lin and his team discovered a gene mutation that might explain 4-year-old Maya Nieder’s rare developmental disease. After years of frustrating doctors and specialists’ visits, Maya’s family may be close to an answer, thanks to Lin’s brainchild — the Rare Genomics Institute. Lin began RGI as place for patients with rare […]

Health

Newly discovered gene may explain 4-year-old’s rare disease, thanks to TED Fellow Jimmy LinNewly discovered gene may explain 4-year-old’s rare disease, thanks to TED Fellow Jimmy Lin

Posted By Kate Torgovnick May

For years, Dana Nieder has been trying to figure out why her daughter Maya suffers from extreme developmental delays. Now 4 years old, Maya is unable to speak, and has already had multiple surgeries. Countless doctors told Nieder that “something genetic” was at the root of Maya’s problems, but six genetic screenings failed to confirm […]