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 Diseases

We are constantly finding and highlighting new rare diseases.

For more diseases, click the button below.

 

 

iHope

Rare Genomics Institute (RG) is happy to partner with leading genetic sequencing laboratory Illumina Inc. (NASDAQ: ILMN) as part of their iHope program, which provides free clinical whole genome sequencing to children affected by rare or undiagnosed diseases.  

Learn More >

Patient Journey

Joaquin has diagnosis, now he needs a cure. After 6 intense years of fighting against an unknown disease  at 3 years of age, & performing all the necessary exams to identify the disease and failing in each of them, Joaquin was diagnosed in March 17 through RG’s philanthropic program iHope with Illumina.

Learn More›

RareShare

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. 

Learn More›

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.


Sign up now›

 

 

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.