RG Patient Research Services (RGPRS)
What is RG Patient Research Services (RGPRS)?
When it comes to rare diseases, answers can be hard to come by. At Rare Genomics our mission is to help you by providing up-to-date information and, whenever possible, by connecting you with assistance. We provide the latest research information about your rare disease related queries and assist with free genome analyses. We can help interpret your genomic information in the context of your medical history and deliver scientific recommendations. For families in need of a diagnosis, we work in conjunction with their physicians towards identifying genetic conditions for family members so they can move forward with disease management.
Through the generosity and expertise of our collaborators, we currently use AI-powered algorithms for analysis. In addition, our ongoing work with biomedical experts in rare disease research means we may be uniquely positioned to match their understanding of rare disease with your needs as a patient.
What RGPRS strives to do for patients:
Provide access to the latest research and answers to questions about rare diseases
Assist patients by facilitating genome analysis
Leverage our broad network of expert biomedical researchers to propel you towards a faster diagnosis
Connect patients and families with other families who may have similar challenges
Research in response to your questions
If you’re visiting this site, chances are you have questions about a rare genetic disease. Please submit your question(s) and fill out the form above. Once the form is submitted, you will receive a confirmation email within 2 business days. Please note you can always ask more questions or add details once a scientist in our team is assigned to your case. Though RG does not provide a medical diagnosis, your team will assist in connecting you with the latest scientific information regarding the research that is most relevant to your particular case.
We appreciate every one of our patients and your request is extremely important to us. Your information will be kept strictly confidential. Thank you!
RGPRS Work So Far
Provided pro-bono in-depth genome analysis to approximately 50 families since 2014
Identified possible disease-causing variants from our analysis
Provided access to information for families about ongoing research in their area of need
Connected families with disease foundations dedicated to supporting their area of need
Recommended enrollment in clinical trials whenever possible
Connected patients with researchers to get enrolled in a research study
Disclaimer: The Rare Genomics Institute (“RG”) is a research organization that can help physicians by comparing certain laboratory findings to the scientific literature. That process sometimes yields insights into poorly understood illnesses. However, RG is not comprised of physicians and cannot not diagnose, treat, or provide prognoses based on our findings. Please consult your physician if you have any medical questions, or call 911 in case of an emergency.