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Probably Genetic Program - No-Cost Genetic Testing

CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND

Foundation
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Funding Amount

Varies

Deadline

Rolling / Open

Grant Type

foundation

Overview

Probably Genetic Program: No-Cost Genetic Testing for Pediatric Epilepsy

Status: Active

Geographic Scope: United States only

Focus Areas:

  • Genetic testing for pediatric epilepsy and seizure disorders

  • Diagnostic support for developmental delay-related disorders

  • Lafora Disease identification and diagnosis

    • Eligibility:

  • Caregivers of pediatric epilepsy patients

  • Individuals experiencing seizure or developmental delay-related disorders

  • U.S. residents only

  • Must complete symptom checker and qualify based on submission

    • What They Provide:

  • No-cost genetic testing (completely free to families)

  • Saliva kit mailed to home address

  • Prepaid return shipping or USPS pickup option

  • Testing for pathogenic, likely pathogenic, and variants of uncertain significance

  • Results reported even if mutations found aren't related to seizure disorders

  • Patient portal for accessing results

  • Option to share results with physicians at patient's request

    • Data Privacy & Security:

  • Probably Genetic is custodian of all patient data

  • Strict HIPAA compliance

  • CLIA and CAP accredited testing pipeline

  • De-identified data may be shared with advocacy groups and biotech companies

  • No identifiable patient information shared with third parties without explicit consent

  • Patient data helps advance understanding of rare disease patient experience

    • Important Notes:

  • Not a clinical trial - does not test therapies or conduct research

  • De-identified learnings may help advocacy groups and biotech companies understand patient experiences

  • Partnership between Probably Genetic and Chelsea's Hope

    • About Probably Genetic Organization:

  • Group of patients, geneticists, and engineers focused on making genetic testing more accessible

  • Partners with patient advocacy groups and biotech companies

  • Mission to end the diagnostic odyssey for rare disease patients

    • How to Apply

    How to Apply

    1. Complete the Probably Genetic Symptom Checker - Access online at Probably Genetic's platform
    - Symptom checker specifically designed for pediatric seizure conditions
    - Brief, patient and family-friendly questions
    - Assesses eligibility based on documented symptoms

    2. Eligibility Notification
    - Individuals who qualify receive notification via email

    3. Receive Testing Kit
    - Saliva kit is mailed to home address

    4. Complete Saliva Sample
    - Simple saliva sample collection at home

    5. Return Sample
    - Option 1: Use prepaid shipping box to return by mail
    - Option 2: Schedule USPS pickup from home (support team can arrange)

    6. Receive Results
    - Access results via unique patient portal
    - Option to share results with physicians by explicit request

    Required Materials:

  • Completion of symptom checker

  • Saliva sample

    • Support Available:

  • Support team available to help with questions

  • Assistance with scheduling USPS pickup if needed

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