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Whole genome sequencing giveaway

ABOUT THE COLLABORATION: The Rare Advocacy Movement (RAM) has decided to take Nebula Genomics up on their offer of five (5) FREE clinical-grade whole genome sequencing tests. All 5 winners will be chosen at random. RAM is not endorsing Nebula Genomics sequencing and/or analysis services. This collaboration is to serve as a vetting opportunity, of which, upon completion, each winner will be contacted by a member of RAM as a follow-up in order to obtain feedback on the services provided by Nebula Genomics. ​

ABOUT THE GIVEAWAY: Each winner will receive one clinical-grade whole genome sequencing test, which should provide patients with valuable insights to help them make informed decisions about their health. According to Nebula Genomics, included in the test is the analysis of over 220+ disease and 40+ carrier conditions, pharmacogenomics, and an ancestry report.

The contest will run from February 28th, 2019 until March 31st, 2019 11:59 p.m. EST. Recipients will be randomly selected and notified on Monday April 8th, 2019. In order to be considered for a sequencing test, you must live in the United States.

Patients will also receive the entirety of their raw genomic data in a BAM/VCF file, as well as a 30-minute virtual genetic counseling follow-up appointment to discuss their results. 

ABOUT THE TEST: While patients will receive a report with details about more well-known genetic variants, it is not a diagnostic test in nature for those with complex undiagnosed disease as we will not be able to interpret any variants of unknown significance. However, patients will receive a file with their whole genome which can be interpreted by their treating geneticist or university lab.

 

 

Nebula Genomics is a genetics company focusing on genomic sequencing. Nebula Genomics seeks to help others understand their genome, which is the genetic information encoded in DNA. Their testing can help reveal information about ancestry, inherited traits, and disease risks. They are committed to transparency and allowing patients to maintain control of personal genomic data, share it securely with researchers, and get compensated fairly. They were co-founded by award-winning genomics pioneer Professor George Church, along with Harvard graduates Dennis Grishin and Kamal Obbad. The company is located in San Francisco and Boston, two global centers of tech and biotech innovation.

TESTING DETAILS

Understand Your Disease Risks

According to Nebula Genomics, this test will give you insights on your risks for hereditary diseases in multiple categories including cancer, cardiovascular diseases, immune disorders, and more. For example, about 1 in 3 people are at risk of developing Nonalcoholic Fatty Liver Disease (NAFLD) due to a pathogenic variant in the PNPLA3 gene*. People with this variant may be able to reduce their risk of getting the disease through lifestyle changes.

Pharmacogenomics (PGx)

PGx identifies how your own genetic makeup potentially influences your response to certain medications. Your unique response to these medications can impact their effectiveness, or cause you to be more likely to experience an adverse drug reaction. For example, a variant in the CYP2C9 gene may cause you to be a poor metabolizer of NSAIDs (e.g. Ibuprofen), so you might consider talking with your doctor to choose an alternative agent.

Know What You May Pass on to Your Children

Learn if you are a carrier for a genetic condition and what you could pass on to your children. For example, if you or your partner carry a pathogenic variant in the CFTR gene, your child has a 1 in 4 chance of getting Cystic Fibrosis**. Learning your carrier status can help you, your partner, and your physician make the most informed decisions about your child’s health.

Learn About Your Traits and Ancestry

Nebula Genomics claims to also look at traits related to nutrition, athleticism, longevity, and more, as well as provide insights on your ancestry.

What the Test Screens For:

  • Cancer Susceptibility

  • Cardiovascular Diseases

  • Immune Disorders

  • Endocrine and Metabolic Disorders

  • Neurological Disorders

  • Organ Health Carrier Conditions

  • Insights on how effectively you metabolize or potentially react to 150+ drugs that treat a variety of conditions, including those in the following categories:

    • Cardiovascular

    • Endocrinology

    • Gastroenterology

    • Hematology

    • Infectious Diseases

    • Neurology

    • Oncology

    • Pain Medicine

    • Psychiatry

    • Pulmonology

    • Transplantation Medicine

  • Insights on more than 50 traits related to:

    • Athleticism

    • Behavior

    • Cardiovascular

    • Hormones

    • Immune System

    • Longevity

    • Metabolism

    • Nutrition and Diet

    • Physical Appearance

    • Sensory Perception

    • Substance Reaction

  • As well as insights on how effectively you metabolize or potentially react to 150+ drugs that treat a variety of conditions.

DISCLAIMER

RAM does not guarantee the services and/or products provided by Nebula Genomics. RAM is simply offering an opportunity for the rare disease community to learn more about Nebula Genomics offerings. Upon completion of the giveaway, RAM will follow up with each winner for an interview to collect feedback regarding their individual experience with Nebula Genomics. RAM will release a report published for public use summarizing findings of the patient experience. According to Nebula Genomics, patients will receive a report with details about more well-known genetic variants. This is not a diagnostic test in nature for those with complex undiagnosed disease. Nebula Genomics will not be able to interpret any variants of unknown significance. However, Nebula Genomics will provide patients with a file with their whole genome which should be able to be interpreted by their treating geneticist or university lab. Any health information provided will be for general information purposes only and is not a substitute for professional health advice. RAM does not provide any health advice and encourages you to consult with the appropriate medical and healthcare professionals. Should a participant not voluntarily agree to provide feedback post giveaway experience with Nebula Genomics, their application will be considered null and void. 

*Source: National Institute of Diabetes and Digestive and Kidney Diseases; National Institutes of Health; U.S. Department of Health and Human Services **Source: PMID: 19092437, PMID: 21642944, PMID: 23974870, PMID: 15371902