TED Blog Post Highlights Progressive Research Models on Rare Diseases

TED Blog Post Highlights Progressive Research Models on Rare Diseases

01.24.13 | By Kaelan Hollon

Confession: I'm a dogged TED talk enthusiast. The website provides doses of genius, innovation and creativity in 20 minute takes; a great brain break for my mid-afternoon caffeine crashes void of all intelligent and rational thought.

Earlier this week, the TED blog highlighted children with rare "orphan" diseases and published a dialogue with C Jimmy Lin of the Rare Genomics Institute. RGI has set up a revolutionary patient-focused approach to rare disease research, empowering patients to research and understand their own disease in new ways.

As it happens, rare diseases aren't altogether actually that "rare" at all. According to the National Institutes of Health, 25-30 million Americans have one of the nearly 7,000 diseases that are officially deemed "rare" because alone they each affect fewer than 200,000 people. Sometimes, only a few hundred Americans are known to have a particular rare disease. There are challenges to research, treat and understand these often little-understood maladies, but there's also been great progress in recent years. In addition to organizations like RGI contributing to patients' understanding of their condition, there are currently more than 400 medicines in development for a variety of rare diseases. See our report on those new medicines here.

RGI promotes an open data model and crowd funding for patient research projects, which depends on strong collaboration between researcher, physician and patient and caregivers. It's been a somewhat controversial model, but could make some big gains in areas like rare diseases where small patient populations could stand to benefit from being actively involved in research into their condition.

Check out Lin's blog and look into RGI's new research models on TED; their innovations are worth a look.

Want even more info on rare diseases? See our handy guide here.

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