At Rare Genomics, we are more than just an organization. We are a community dedicated to helping rare disease patients find hope for a cure.

We work alongside patients and their families, providing them with the necessary tools, knowledge, and connections so that they can better understand the cause of their disease. 

We bring together scientists, entrepreneurs, innovators, and professionals, who share our passion for helping rare disease patients and leverage the crowdfunding capabilities of the Internet to bring the hope of a cure to our patients.

If you are a patient, Learn More ›

Rare Disease Day 

The date is official and it is just around the corner – February 28th 2017. This year is the tenth annual Rare Disease Day. And we at RG will of course be a part of this anniversary. 

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News & Events

Find out the latest news from the Rare Genomics Institute, new partnerships, patient information and much more. RG also hosts events from webinars for patients and other information sessions.


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RareShare is an online social network for patients, families, healthcare professionals and others affected by rare disease. We have over 8000 members in almost 1000 different rare disease communities. RareShare connects communities via direct messaging and forum discussions. 

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Get RG's Newsletter 

Rare Genomic's monthly newsletter is the best resource for the latest on RG and Rare Disease, whether you're a prospective patient, family member, carer, researcher, academic keep up-to-date and sign up for our newsletter.

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Solving the Mystery of Rare Diseases

Dr. Jimmy Lin of Rare Genomics Institute invites his audience on a compelling and emotional journey into the lives of children living with rare diseases. He paints a picture of hope through technology while leveraging crowdfunding models to help families on the road to discovering life-saving therapies for rare diseases.

In the spirit of ideas worth spreading, TEDx is a program of local, self-organized events that bring people together to share a TED-like experience. At a TEDx event, TEDTalks video and live speakers combine to spark deep discussion and connection in a small group. These local, self-organized events are branded TEDx, where x = independently organized TED event.