Through RG, qualified candidates can be a part of the era of personalized medical programs based on genomic sequencing. Families in need will get a chance to find answers and the knowledge provided will accelerate biomedical research innovations and personalized medicine.
The following steps are the patient-centered model for connecting with sequencing services:
Step 1: Connect with RG
After emailing, you will receive a link to an application form. This form will determine whether you are a good fit for RG’s services. The application asks that you provide relevant medical information and consent for RG to share the information with physicians in our network.
Step 2: Talk to a patient advocate
You will be assigned a patient advocate, who will usher you through the entire research process and will be your point of contact within RG. Your patient advocate will contact you to set-up an informational phone call. This call is designed to educate you about the process and answer any questions you may have in real time.
After the call, you will be asked to fill out a follow up form. This form is meant to make sure you understand the RG process and help match you with the most fitting research site. Each site has different requirements, contacts, costs, and specifications. Once you are assigned a site, your patient advocate will guide you through the next steps.
Note: When determining the site for you, we consider site availability and your location. For example, some sites already have a long waiting list of patients. We try to choose a site that is readily available and is also close to you.
Step 3: Preparation before visiting the research site
Discuss With Others: Genome Sequencing is an important decision, we recommend discussing your decision with friends, family, and significant others.
Gather Records: Please obtain all relevant medical records from all the physicians the patient has visited. This is essential to determine eligibility and analyze genetic results.
Make an Appointment: You must make and keep your appointment with the clinical geneticist at the site. This is important because the clinical geneticist must determine eligibility for sequencing, and he/she will be involved in analyzing the sequencing results. Currently, the wait time for an appointment with a clinical geneticist in our network is 1-6 months, so we encourage our families to make their appointments as soon as possible.
Note: The visit to the research site is a clinical visit. Most appointments are covered by insurance as a referral or a second opinion consultation. You should check with your insurance company to determine if a referral is required. RG does not cover this cost or travel expenses.
Step 4: Your Research Site Visit
At your visit with the clinical geneticist, he or she will determine if there is any clinical testing that should be performed before completing exome sequencing (e.g. gene panel, mitochondrial sequencing, microarray, etc). In addition, he or she will help determine whether you will be likely to benefit from whole exome or genome sequencing. This visit also serves as your opportunity to ask any medically related questions you may have.
Note: If any sort of testing is determined applicable, whether a microarray or whole exome sequencing, samples for the test will be taken during your visit. Please be prepared to give blood or other forms of samples at your appointment. Additionally, though samples will be taken that day, no tests or sequencing will be performed until all test fees have been completely collected.
There are additional RG branches around the world. Please view their contact information at the end of this pamphlet.
Step 5: Service Payment / Funding for Research
As a non-profit organization, RG strives to provide access to cutting edge technologies. Unfortunately, we do not currently have the funds to pay for the genetic sequencing and analysis of each family. We provide the following options to facilitate access to these technologies.
Service Payment Options:
Self-pay: Out of pocket payment is always an option. Though, this option is unrealistic for most families.
Insurance: Not all sites accept insurance, and this is something we will take into consideration when matching you with a site.
Crowdfunding: Crowdfunding is a fundraising platform to help you raise funds through our website. By creating a profile for your child, we allow people to directly donate to your genetic research. On this page, you can write a short summary of your child’s story and provide a picture if you wish. Though we have been successful with most of our fundraising campaigns, we have learned that in order to achieve success you must be proactive in utilizing not only your network of friends and family but also your extended network.
Note: Sequencing will not begin until the entire funds are raised for a project.
Step 6: After sequencing
In general, turn around times for exome sequencing average around 2-6 months, but in many circumstances, it may take longer. Depending on the case, further research might be necessary. Your patient advocate will strive to update you on the latest progress. If you have any questions during this period, feel free to contact your patient advocate.
Step 7: What to expect from sequencing
There are a variety of different possible outcomes from genetic analysis and the results can be returned in a variety of different formats depending on the site. Most likely, a physician familiar with the case will relay the results to you. In some cases, the results will look like a list of genes comprising variations of interest.
The best case scenario is that a known variation in a known gene is identified, which points to a diagnosis or possible next steps. In another scenario one or more genetic variations are identified, but the meaning of the genetic variation is unknown. Currently, only ⅓ to ¼ of patients walk away from whole genetic testing with a new diagnosis. After diagnosis, patients could require substantial additional research before a possible clinical intervention is identified. Another potential outcome is that no genetic variations of interest are identified. In the later case, no diagnosis is reached.
The following steps are the patient-centered model for connecting with sequencing services:
Step 1: Connect with RG
After emailing, you will receive a link to an application form. This form will determine whether you are a good fit for RG’s services. The application asks that you provide relevant medical information and consent for RG to share the information with physicians in our network.
Step 2: Talk to a patient advocate
You will be assigned a patient advocate, who will usher you through the entire research process and will be your point of contact within RG. Your patient advocate will contact you to set-up an informational phone call. This call is designed to educate you about the process and answer any questions you may have in real time.
After the call, you will be asked to fill out a follow up form. This form is meant to make sure you understand the RG process and help match you with the most fitting research site. Each site has different requirements, contacts, costs, and specifications. Once you are assigned a site, your patient advocate will guide you through the next steps.
Note: When determining the site for you, we consider site availability and your location. For example, some sites already have a long waiting list of patients. We try to choose a site that is readily available and is also close to you.
Step 3: Preparation before visiting the research site
Discuss With Others: Genome Sequencing is an important decision, we recommend discussing your decision with friends, family, and significant others.
Gather Records: Please obtain all relevant medical records from all the physicians the patient has visited. This is essential to determine eligibility and analyze genetic results.
Make an Appointment: You must make and keep your appointment with the clinical geneticist at the site. This is important because the clinical geneticist must determine eligibility for sequencing, and he/she will be involved in analyzing the sequencing results. Currently, the wait time for an appointment with a clinical geneticist in our network is 1-6 months, so we encourage our families to make their appointments as soon as possible.
Note: The visit to the research site is a clinical visit. Most appointments are covered by insurance as a referral or a second opinion consultation. You should check with your insurance company to determine if a referral is required. RG does not cover this cost or travel expenses.
Step 4: Your Research Site Visit
At your visit with the clinical geneticist, he or she will determine if there is any clinical testing that should be performed before completing exome sequencing (e.g. gene panel, mitochondrial sequencing, microarray, etc). In addition, he or she will help determine whether you will be likely to benefit from whole exome or genome sequencing. This visit also serves as your opportunity to ask any medically related questions you may have.
Note: If any sort of testing is determined applicable, whether a microarray or whole exome sequencing, samples for the test will be taken during your visit. Please be prepared to give blood or other forms of samples at your appointment. Additionally, though samples will be taken that day, no tests or sequencing will be performed until all test fees have been completely collected.
There are additional RG branches around the world. Please view their contact information at the end of this pamphlet.
Step 5: Service Payment / Funding for Research
As a non-profit organization, RG strives to provide access to cutting edge technologies. Unfortunately, we do not currently have the funds to pay for the genetic sequencing and analysis of each family. We provide the following options to facilitate access to these technologies.
Service Payment Options:
Self-pay: Out of pocket payment is always an option. Though, this option is unrealistic for most families.
Insurance: Not all sites accept insurance, and this is something we will take into consideration when matching you with a site.
Crowdfunding: Crowdfunding is a fundraising platform to help you raise funds through our website. By creating a profile for your child, we allow people to directly donate to your genetic research. On this page, you can write a short summary of your child’s story and provide a picture if you wish. Though we have been successful with most of our fundraising campaigns, we have learned that in order to achieve success you must be proactive in utilizing not only your network of friends and family but also your extended network.
Note: Sequencing will not begin until the entire funds are raised for a project.
Step 6: After sequencing
In general, turn around times for exome sequencing average around 2-6 months, but in many circumstances, it may take longer. Depending on the case, further research might be necessary. Your patient advocate will strive to update you on the latest progress. If you have any questions during this period, feel free to contact your patient advocate.
Step 7: What to expect from sequencing
There are a variety of different possible outcomes from genetic analysis and the results can be returned in a variety of different formats depending on the site. Most likely, a physician familiar with the case will relay the results to you. In some cases, the results will look like a list of genes comprising variations of interest.
The best case scenario is that a known variation in a known gene is identified, which points to a diagnosis or possible next steps. In another scenario one or more genetic variations are identified, but the meaning of the genetic variation is unknown. Currently, only ⅓ to ¼ of patients walk away from whole genetic testing with a new diagnosis. After diagnosis, patients could require substantial additional research before a possible clinical intervention is identified. Another potential outcome is that no genetic variations of interest are identified. In the later case, no diagnosis is reached.
Location: United States, California, Downey
Employees: 51-200
Founded date: 2011
Investors 2
| Date | Name | Website |
| - | Praxis (ac... | praxislabs... |
| - | Startup Le... | startuplea... |
Mentions in press and media 6
| Date | Title | Description |
| 15.09.2015 | Rare Genomics Institute Launches 10 Crowdfunding Campaigns to Help Rare Disease Patients | Rare Genomics Institute (RG) is launching ten separate crowdfunding campaigns to help patients with rare diseases pinpoint the causes of their illnesses. All amounts raised will go towards exome sequencing, which is a cutting-edge method of... |
| 19.06.2015 | Crowdfunding Effort Targets Patients Seeking Genome Sequencing | Rare Genomics Institute (RG) is launching a 30-day crowdfunding bootcamp to help rare disease patients raise funds for high-end exome sequencing to pinpoint the cause of their disease and map possible treatments. The training session is an ... |
| 06.05.2015 | Rare Genomics Institute to Study Impact of Crowdfunding on Rare Diseases | The Rare Genomics Institute (RG) is launching a new study aimed at determining how crowdfunding can promote scientific research to help rare disease patients called Amplify Hope Initiative. RG is an international non-profit providing rare d... |
| 02.07.2013 | Website campaigns help raise funds to pay medical bills | The contributions, which can be given by name or anonymously, typically range from the very small (as little as $5) to the extremely generous ($1,000 and up). In the Kennetts’ case, donations ranged from $10 to $2,000. Most sites are for-pr... |
| 21.07.2012 | From MIT to Stanford, college classes where a startup is the final exam | College campuses are becoming incubators for startups, offering encouragement in the form of classes to nurture young dreamers. This explains the influx of 21-year-olds making millions of dollars in investment before they can legally pop a ... |
| - | Website campaigns help raise funds to pay medical bills | Even with Stage IV lung cancer, there are moments when 32-year-old Chip Kennett feels blessed. Over the course of two weeks in April, those moments were many, as 325 friends and family members contributed $56,800 over the Internet to help d... |