Accelerating Answers Programs
NPC Detect Sponsored Testing Program
Zevra Therapeutics, in partnership with GeneDx, is offering a no-cost genetic testing program for individuals with suspected Niemann-Pick disease type C (NPC), an ultra-rare, progressive genetic disorder that affects the body’s ability to transport cholesterol and other lipids within cells. This program is designed to support earlier diagnosis and help guide appropriate clinical care.
Through this program, your eligible patients can receive exome testing at no cost.
What is Niemann-Pick disease type C (NPC)?
Niemann-Pick disease type C (NPC) is an ultra-rare, inherited lysosomal storage disorder that disrupts the body’s ability to transport cholesterol and other lipids within cells. This leads to progressive accumulation in tissues, causing neurological and visceral symptoms.
NPC can present at any age and is characterized by a wide range of clinical features, often resulting in delayed diagnosis. Disease progression is irreversible and varies depending on the age of onset.
It is characterized by:
- Ataxia
- Dysphagia
- Cognitive decline or developmental delay/regression
- Impaired fine motor skills
- Speech difficulties
- Progressive neurodegeneration
Because symptoms can vary significantly and overlap with other conditions, comprehensive genomic testing is often required to establish a definitive diagnosis.
Early and accurate genetic confirmation can support timely intervention, inform care decisions, and identify patients who may be eligible for disease-specific therapies.
Details and Benefits of the Program
No out-of-pocket costs for eligible patients
All testing associated with this program is covered by our partner.
Access to comprehensive exome testing
With ExomeDxTM, your patients get comprehensive and timely results.
Advances future care
Data from this program helps to build a better understanding of the disease to develop future care treatment.
Is your patient eligible?
Testing will be available to patients who meet the following eligibility criteria
- Suspected of having Niemann-Pick disease type C (NPC)
- Must present with all three (3) of the following symptoms
- Ataxia
- Dysphagia
- Either developmental delay, developmental regression, or intellectual disability
- Reside in the USA
- Must not have had prior genetic testing performed by a clinical laboratory which explained the patient’s symptoms
- The ordering provider must be authorized under applicable law to order genetic testing in the United States
- Must consent to sharing de-identified data with Zevra Therapeutics
How does the program work?
The testing works like any other GeneDx test order, with a few differences.
Eligibility
Eligibility criteria must be met.
Ordering
For portal orders, log in here or follow these steps to create an account. Provide the program code (STP-NPC) after adding ExomeDx (proband) to your cart. For paper TRF orders, use this specific NPC. To collect samples follow these specimen requirements instructions.
Report
You will receive a comprehensive clinical report with expert interpretation of your patient’s results.
Billing
No claim will be submitted to a patient’s insurance. All tests are covered directly by Zevra Therapeutics.
Additional resources
Testing Program test requisition form
Contact our team
NPC Detect Sponsored Testing Program
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About Zevra Therapeutics
Zevra Therapeutics, Inc. is a commercial-stage company with a late-stage pipeline committed to redefining what is possible in bringing life-changing therapies to people living with rare diseases.
The Company is focused on broadening access through geographic expansion opportunities, progressing its pipeline toward key milestones, and delivering meaningful therapeutics. The commercialization of its lead product, marketed in the U.S. for Niemann-Pick disease type C (NPC), a rare, progressive neurodegenerative disease, provides a strong corporate foundation and validates its ability to advance therapies from development to market. Zevra's vision is realized through disciplined execution of its strategic plan and core values — patient centricity, integrity, accountability, innovation, and courage — which guide its efforts to deliver long-term value.
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