Programs
RG’s cost-free programs provide Analysis, Resources, Information, and Support
Sequencing
Genome sequencing is the first step toward getting a diagnosis, and appropriate care and resources for those who have not yet had their genome sequenced and analyzed. Rare Genomics Institute can facilitate genome sequencing by putting you in touch with one of our partner organizations to get a genetic sequence.
Patient Research Services
Patient research services focuses on re-analysis of information in the patient's genome to uncover matches between the genetic sequence and the full catalogue of known diagnoses to see if there might be a match.
The rare disease landscape is constantly changing, with newly identified variants of rare diseases occurring frequently, so even if patients were previously sequenced and analyzed, they may benefit from having their genome re-analyzed.
RareWear
Wearable devices such as vital function monitors can dramatically improve quality of life for patients affected by rare disease. Rare Wear is a program that helps to match patients with devices as appropriate devices become available. When a match is made, Rare Genomics will connect patients to one of RareWear’s sponsoring companies to provide a device free of charge. Devices will be provided based on patient need and availability through the duration of the program.
RareShare
RareShare is an online social hub serving hundreds of rare disorder communities since 2008, allowing the direct exchange of information among patients, families, research organizations, and healthcare professionals to improve the lives of those affected. The platform also offers podcasts and other educational resources, providing up-to-date information about rare diseases.
How To Join Our Programs
1
Fill out our Contact Form
Fill out our contact form, select ‘Patient,’ and provide details on how we can help so that we have some basic information. You may also enter any questions you have on specific programs.
2
Patient Advocate Review
An advocate will get in contact within 3 business days to get detailed information so they help determine whether one of our services can fulfill your needs.
3
Get Matched
After determining if we have a suitable program for you, we will assist in connecting you with the appropriate programs uniquely suited to your needs.