Empowering Patients Today
Accelerating The Cures of Tomorrow
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.
Our Programs
Patient Advocacy
The Patient Advocacy Team works directly with patients and their families to navigate genetic research and identify the latest opportunities for undiagnosed and rare disease patients. We are 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. Your patient advocate will walk you through the whole process.
RGTF
The Rare Genomics Task Force (RGTF) is a novel scientist consultation platform where you can have your questions answered by experts. They can answer questions about a rare disease, genetics and resources in the genetics landscape. Though RG does not provide a medical diagnosis, the RGTF team will be able to provide the latest scientific information regarding the research on numerous particular conditions.
BeHeard
The BeHEARD (Helping Empower and Accelerate Research Discoveries) Challenge provides technology and financial grants for rare disease research. This competition is hosted annually by the Rare Genomics Institute and is open globally to researchers, foundations, or anyone whose research is constrained by limited resources. By supporting rare disease research worldwide, we can come closer to an answer for our patients.
Patient Research
The Patient Research Services Team provides pro-bono genetic research to patients in need. Our team of genetic scientists leverage their broad network of expert biomedical researchers to crowdsource scientific ideas, experiments, and analyses that may lead to a better understanding of rare diseases. They have built a novel system to efficiently share biological material and data between patients and researchers to expedite the discovery process.
RGDI
The mission of the Rare Genomics Drug Initiative (RGDI) is to help advance drugs for rare diseases with limited therapeutic options. RGDI is a science-driven initiative aimed at building a strong foundation of knowledge combined with strategic partnerships to facilitate drug discovery and development.
Education
From our founding we understand it is crucial to provide vetted educational materials for patients, clinicians, researchers as well as the community in order to make sure we know and understand the latest opportunities in genetics for rare disease patients. Throughout the way we have created materials on genetics, sequencing, crowdfunding and more. Materials are shared on our website and social media channels.
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. RareShare also holds educational podcasts on topics and diseases of interest, featuring rare disease, genetics and advocacy experts from around the world.
International
Our team of international specialists work to build alliances and bring awareness to create hope in your specific corner of the world. Our international vision goes one step further by reaching out to patient groups, organizations, research institutions and members in other countries. We accomplish that through a combination of ongoing outreach, our Global Alliance Partner program, and building communication bridges.
RareWear
RG RareWear is a new initiative hosted by RG to connect medical device companies to the rare disease patient community. This program aims to provide rare disease patients with the latest available medical technology to monitor and manage their condition, while mutually benefiting the sponsoring company by introducing their technology to a highly motivated and in-need population.
RG Giving
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Feel inspired? Want to be heard? Share your story with Rare Genomics and be seen by the rare disease community! Click here to complete our latest "Share Your Story" form.
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.
