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 that demystifies rare diseases, created in collaboration with graphic artist & TED Senior Fellow Lope Gutiérrez-Ruiz. (See it after the jump!)
Through crowdsourced funding and a network of experts, Jimmy’s Rare Genomics Institute enables rare-disease patients and their families to fund and design personalized research projects.
How far has the RGI come in the last year since you were last in Long Beach?
Over the past year, RGI has raised over $750,000 for rare diseases, helped discover one genetic disease, and helped numerous families start their path of create projects studying diseases that are otherwise not addressed.
How has the Fellowship help make this possible?
The TED Fellowship has played a major role in our growth with RGI — whether through collaboration with other Fellows, helping spread the message and hope of research, or cheerleading and support from the TED team, Fellows and coaches. RGI would not be able to help as many children and diseases without the help of TED.
One of the coolest part of the Fellows program is the great diversity of skills, interests, and passions. It was great to collaborate with Lope to tell the importance and burden of rare disease, but also inspire hope for the patients, families and the whole community.