Rare diseases don't get walk-a-thons.
They get us.


Special thanks to all not (yet!) part of the team

Your knowledge, expertise, advice, and encouragement are helping us shape our program and navigate the many challenges along this journey. As we find our feet, your faith in our vision keeps us moving in the right direction. We are privileged to have your support - Plavi

Craig Stewart
Nathan Every
Nicholas Evans
Margaret Anderson
Emma Every
Anne Cavassa
Boris Nikolic
Sarah Shira
Hillarie Windish
Sophia Copeland
Sandi Parsons
Yann Mazabraud
Laurie Long
Ephrem Chin
Andrew Washburn
Stephanie Morain
Alpna Seth
Lynsey Elve
John Wilbanks
Claudia Mitchell
Susan Betcher
Josh Thayer
Susan Sparks
Sarah Gonzalez
Isabella Parsons
Plavi’s Family
Chris Karp
Niranjan Bose
Laura Rufibach
Adrien Guerard
Keith Alkek
Nila Gurusinghe
UW’s Montlake Consulting Group
Miriam Chilton
Doug Albrecht
Chris Murray
Nishka Mittal
Craig McLuckie
Ankur Vora
John Garvey


Q & A

Program Details

How is the program structured?

IDG’s genomic program is geared towards diagnostics and research for rare diseases. Our aim is to provide swift access to the power of whole genome sequencing for the thousands of patients across the US suffering from rare, undiagnosed conditions.

The program is being deployed in phases, beginning with the Raring to Go patient and physician registry. This will be followed by sample and clinical data collection, which will then lead into the genomics data generation phase.

What is the Raring to Go registry?

Raring to Go! is IDG’s patient and physician registry. In addition to helping us assess the need for diagnostics of rare diseases across US, it also serves as our beta testing platform for our next phase – sample and clinical data collection.

Sign up here

Who can register for Raring to Go?

Patients suspected of suffering from rare genetic conditions are eligible to sign-up for the registry.

Why will you need my blood sample?

IDG’s genomic test will sequence a patient’s genome to find clues about their disease. The genome, or DNA, is in every cell in the body – including blood. IDG will use a “dried blood spot card” to collect a patient’s blood which will serve as the source of their DNA. This is a small paper card that can easily be stored at room temperature and sent through the mail. Blood is collected via a small finger prick – much like the daily routine adopted by many people to measure blood glucose levels – and spotted onto the card.

Can participating in research improve my treatment?

We don’t know, and you shouldn’t expect it to.

Scientific discoveries are difficult to predict, and we cannot promise that our research will develop a treatment for your condition in the near future. We do know that breakthroughs happen when dedicated minds pool together and fight for change.

How will IDG handle my personal information?

IDG policies and technology all strictly adhere to HIPAA compliant practices, which represent the standard used across healthcare institutions in the US. This guarantees anonymity to patients participating in diagnostic and research programs. Even the researchers analyzing data will not have access to patients’ personal information, and this information is never disclosed to a third party.

What can I expect after registering for Raring to Go?

If you fit the inclusion criteria of the next phase, we will invite you to sign up for subsequent sample collection.  Registering for Raring to Go does not obligate you to participate in the future, and you may choose to withdraw at any time. We hope to launch phase II mid-2018.


Genetics + Genomics

What’s the genome?

The genome refers to all of the information contained in a DNA sequence. The human genome is approximately 3,200,000,000 bases long, and it encodes the blueprints for every cell in the body. The genome is highly regulated and very complex. Every cell has the same genome, so each cell must properly control gene expression to function correctly. Different patterns in gene expression keep cells in your heart pumping and cells in your muscles taking in oxygen.

Biologists and computational scientists have identified ways of interpreting the genome to predict these functions. It has also been found that some patterns in the genome are linked to atypical biological function, which can sometimes impact a person’s health. These atypical genomic patterns are called variants.

Who has genetic variants?


On average individuals have ~300 variants. Some impact health, some don’t. Some have no impact at all. The only way to determine which variants an individual possesses is by sequencing the variant.

What are the benefits of genome sequencing?

Genome sequencing captures over 85% of a person’s DNA – the most any technology can reliable achieve. Most other genetic testing options focus on a few variants at a time. For patients with hard to diagnose conditions, it often takes repeated rounds of this “panel” approach to find the diagnosis. If the variant is in the regulatory region, and not a gene, it may never be found. Sometimes all the gene-coding regions are assessed via “exome” testing. The exome makes up ~2% of the genome and does not capture structural or regulatory variants. Genome sequencing is the only approach that assess all variants in a timely manner.

Additionally, genome sequencing benefits research. Because the entire genome is capture, it is possible to identify new variants for diagnostic testing or even therapy development.

Can genetic testing impact my health insurance?


In 2008 the US passed GINA – the Genetic Information Nondiscrimination Act. This prohibits American health insurance providers from considering genetic information when determining a person’s health insurance policy. This includes decisions surrounding eligibility for health insurance or terms of coverage. This law was intended to encourage people to make healthy decisions by discussing genetic risks with their physician.

GINA does not restrict long term or life insurance companies in the same way. IDG encourages all people at risk to be diagnosed with a chronic genetic illness to research your personal options and discuss them with your healthcare provider when deciding to pursue any type of genetic testing, including genomic analysis.

What are IDG’s research interests?

IDG supports research that can improve standards of care for rare disease patients. Historically, rare disease research has been slow to progress because many researchers cannot identify enough patients to demonstrate significant patterns.

IDG’s program can reach and diagnose thousands of rare disease patients. This is the perfect opportunity to collect genomic and clinical data that is needed to improve diagnostics and treatments.


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