Our Clinical Geneticists and Scientists help families like yours get access to genome sequencing. Contact us and apply to participate in the RGI program.
You will speak with a member of our patient advocacy team, who will answer your questions. We will then put you in contact with a geneticist and a researcher working at one of the research sites in our network.
Your clinical geneticist and researcher will take care of all the sequencing and analysis. This process can take 3 - 6 months. We will work with you to find a financing mechanism.
Our Clinical Geneticists and team of Scientists will work together to hopefully discover the causes of the syndrome and to identify better courses of treatment for your child.
Rare diseases are defined as those diseases or conditions that affect less than 200,000 people in the USA. Definitions vary depending on the country, but generally, they affect less than 1 in ~2,000 individuals.
Recent studies have highlighted the ability of sequencing technologies to identify uncommon gene mutations that cause the rare disease, and which tend to be undetected by conventional tests. This research has, in some cases, led to more accurate diagnoses and more efficacious therapies.
100% of funds will go directly to costs associated with sequencing and analysis of patient genomes.
Leading genomics researchers at academic institutions. Just have a look at our team page, which also lists our scientific advisors and partners.
Technically, nothing. We want to accelerate research and potentially contribute to improve the quality of life for every patient. We are a non-proft organization and don't charge any fees. We help the patient to raise funds for research in the hopes of finding a cure.
RGI will ensure that patient information is kept in the strictest confidence according to government regulations. Sequences will only be made available to the research community once they have been completely anonymized.
Please feel free to contact us!