Hang on. It will be an emotional ride, but you're not alone.
Understand Your Diagnosis
Know the difference between a clinical and molecular diagnosis
Know Your Rights
Advocate for better rare disease treatments
Embrace the Unknown
Find support and learn about emerging opportunities
Genetic testing is a starting point for care
For many rare diseases genomic analysis can deliver a more precise and actionable diagnosis than traditional methods. In today's age of precision medicine, this uncovers the potential to benefit from emerging targeted therapies.
Knowing how unique patterns, or variants, in a person's DNA influence health leads to faster diagnosis and improved care. Already, dozens of relationships between DNA, or the genome, and health have revolutionized the way we think about, diagnose, and treat disease.
Combining these findings from tens of thousands of people allows us to unearth previously hidden insights to disease and treatment pathways.
The importance of genetic counseling and patient education
InDepth Genomics is on a mission to help people find the genetic answer to their symptoms from rare disease. We want to establish a high level of patient awareness by providing the most relevant and latest information. This will enable patients to gain insights into their genetic diagnosis, learn about treatment options and ongoing trials, as well as become active participants in cutting edge research.
We hope to offer all patients genetic counseling to interpret their genetic diagnosis, and offer guidance on treatment options, additional follow-up tests and family planning about their specific condition all by certified and trained genetic counselors.
We expect to empower our patient communities with increased know-how about their condition and its management, the confidence to have informed and productive discussions with physicians.
In-Depth Genomic's Advocacy Partners bring patients into the conversation on rare disease research. By working together we can overcome the major hurdle of patient diagnosis.
With genomic analysis, there is no longer a reason to spend 7+ years working to diagnose a rare condition. We can solve thousands of complicated diagnoses and direct patients towards their best care. Precision medicine has the power to revolutionize the diagnostic odyssey of rare diseases.
Interested in becoming an Advocacy Partner?
What does IDG do with my information?
The information you provide through Raring to Go informs our strategic team about patient recruitment for Phase 2. We also use your contact details to keep your organization informed about testing opportunities for your patient community.
Can patients from our registry participate?
Any patient without a genetic diagnosis is eligible for participation in our program. All patients with undiagnosed symptoms, or with inconclusive genetic testing results are welcome to register.
Will my organization be able to recruit patients diagnosed through In-Depth’s program?
IDG understands the importance of connecting patients with their advocacy home. To respect our patient’s privacy, we cannot share any of their information with third parties, including our Advocacy Partners. Patients receive information about next steps for care in their clinical report; we hope to provide patient with personalized advocacy organization and patient community information.
Why should advocacy organizations sign up?
Central to In-Depth Genomics’ philosophy is helping patients through community support. There are many ways that a large network supports patients in need of diagnostic testing. Here are a few ways Advocacy Partners’ support helps:
- Your registration helps highlight the diagnostic need of your patient community
- Patients already in your community may gain streamlined access to our free genomic sequencing programs
- We can better direct patients to their organization after diagnosis, if they don’t already know about your efforts
What kind of Advocacy Partner is In-Depth seeking?
IDG is looking for a variety of patient and disease advocacy groups. Our diagnostic program focuses on rare genetic diseases. As opportunities for patients groups arise, we will immediately open programs. Having a fleet of Advocacy ready to support our dynamic program optimizes the patients’ experience.
What type of support is requested from an Advocacy Partner?
Our belief is that rare disease organizations have distilled the expert knowledge about specific conditions, and for that reason we want to connect diagnosed patients directly to their advocacy home. To accomplish this, official IDG partners will have a dedicated point of contact that IDG can share with patients. In addition, we will seek guidance from our partners for developing educational content for patients in the form of web tutorials, webinars and videos.
We also request our partners to actively promote our genomics program to their patients and relevant clinicians by encouraging them to sign-up to RARING TO GO. The extent of our outreach is a critical factor in keeping our genetic testing program free to all patients.
Our patient community requires additional, non genetic, testing for a conclusive diagnosis; will this be included?
There are several biochemical and other tests included in our genomic sequencing program. Please reach us to find out if your specific test is included or not.
Will IDG be contacting Advocacy Partners when Phase 2 begins?
We will reach you as soon as opportunities for your patient community arise.
What information will be shared with third parties?
IDG does not share any contact details, identifying information, or patient information with 3rd parties.
Can In-Depth help us implement genetic panel screening programs?
Please contact us if you are interested in sponsoring a genetic research program for your patient community.