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 […]
Stories for "Jimmy Lin"
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 […]
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 […]
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 […]
“This is my brain cancer. It isn’t nice,” says Salvatore Iaconesi, the engineer, artist and TED Fellow who recently opened up his medical files to the world, crowdsourcing cures of the medical type as well as those for the soul. In this just-released talk from TEDxTransmedia, Iaconesi explains why he made the decision to release […]
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 […]