Genetic Testing

UMDF No-Cost Genetic Testing Opportunities

CLINICIAN REFERRAL REQUIRED

UMDF’s Clinician-Initiated, Patient-Enabled No-Cost Genetic Testing Program

 Status: Open to new applicants

Details: The UMDF Clinician-Initiated, Patient-Enabled No-Cost Genetic Testing Program, hosted in partnership with Probably Genetic, is designed to help empower physicians and patients. Clinicians start the process by entering the patient’s information into the Probably Genetic portal, which will send an email prompting the patient to enter symptoms via Probably Genetic. If it’s determined the patient qualifies, they will be sent a saliva kit at their home with instructions for collection and return. Results can be expected in 6-8 weeks, along with a shareable report link. Patients are encouraged to access free genetic counseling through Probably Genetic following results.

The offered test from the diagnostic lab associated with Probably Genetic is based on a whole genome backbone and will return results for all known pathogenic nuclear genes associated with mitochondrial disease as well as full mitochondrial DNA sequencing.

Who Can Order?: Any U.S.-based healthcare provider with a valid National Provider Identifier.

What are the Qualification Requirements?: The patient must reside in the USA, never had whole exome or whole genome sequencing, be without insurance (or without insurance that would cover costs for such tests) and demonstrate a high likelihood of a primary mitochondrial disease diagnosis based on information provided during the intake process.

Click Here for a list of Frequently Asked Questions.

Supported in part by an unrestricted grant from UCB. 

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Other No-Cost Genetic Testing Opportunities

ORDERED BY PATIENTS OR CAREGIVERS

Probably Genetic’s Free Genetic Testing
for Mitochondrial Disease

Status: Open to new applicants

Details: Patients or caregivers take a short Probably Genetic quiz of your symptoms to check eligibility. If an independent clinician approves the test order, Probably Genetic sends a kit right to your door. Collect some saliva yourself and send it back in the pre-paid box. Receive your results in 6-12 weeks from a CLIA-Certified & CAP-Accredited Lab.

Who Can Order? Patients or caregivers.

“We know the diagnostic journey for a mitochondrial disease patient is often long and difficult. By offering a no-cost genetic testing program, UMDF aims to shorten and simplify the journey for our patient community.”

Philip Yeske, PhD  • Science & Alliance Officer at UMDF
Uncovering a

Mitochondrial Disease Diagnosis

The journey to a correct diagnosis is one of the biggest challenges facing mitochondrial disease patients and families because many other conditions may have similar symptoms.

Shorten the Journey with a No-Cost Genetic Test

The UMDF no-cost genetic testing programs are collaborative initiatives to provide qualified candidates of all ages a complimentary genetic test. A genetic test is the quickest, most accurate way to confirm once and for all if you or a loved one has mitochondrial disease.

There are many benefits to having a confirmed genetic diagnosis of mitochondrial disease, including:
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Access to better medical care
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Starting the correct treatments and therapies
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Participating in clinical trials
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The comfort of knowing the precise nature of your disease
It is estimated that more than half of all mitochondrial disease patients don’t have a genetic diagnosis.

Did you know? A confirmed genetic diagnosis is typically required in order to participate in clinical trials, and without patients, clinical trials are delayed and progress toward treatments for mitochondrial disease is stalled.