Taking the next step toward answers.
If your child’s signs and symptoms raise concerns, talking with your healthcare provider about genetic testing can be an important step toward finding answers.1
SPONSORED GENETIC TESTING AT NO COST
Beren offers a sponsored genetic testing program that helps eligible families access whole genome sequencing at no cost. Share this testing link with your healthcare provider at your next visit.
NPC=Niemann-Pick type C.
2 years old, living with infantile-onset NPC, and dad, Tiago.
OR IT COULD BE NPC
You’ve been noticing changes in your child that don’t add up or signs that are becoming harder to explain. If something doesn’t feel right, but you’ve been told to wait, don’t. Waiting and watching can delay answers.1
Ask your doctor about genetic testing for Niemann-Pick type C, or NPC, before more developmental milestones are delayed or lost.
Taking the next step toward answers.
2 years old, living with infantile-onset NPC, and dad, Tiago.
If your child’s signs and symptoms raise concerns, talking with your healthcare provider about genetic testing can be an important step toward finding answers.1
SPONSORED GENETIC TESTING AT NO COST
Beren offers a sponsored genetic testing program that helps eligible families access whole genome sequencing at no cost. Share this testing link with your healthcare provider at your next visit.
“She’ll do it when She’s ready.”
NPC=Niemann-Pick type C.
Before your appointment
A little preparation can help make the most of your appointment. Consider gathering information that may help your healthcare provider better understand your child’s symptoms and medical history, such as:
- A list of the signs and symptoms you’ve noticed
- Delayed, missed, or lost milestones that concern you
- When you first noticed changes or symptoms
- Previous evaluations or test results, if available
- Family history, if known
- Questions you’d like answered
Not a real patient.
REVIEW THE SIGNS OF NPC
Use this symptom checklist to help recognize possible signs of NPC in your child and prepare for a conversation with your child’s healthcare provider.
Questions you may want to ask
Share the changes you’ve noticed in your child and any information you’ve gathered. Then use the questions below to help guide your conversation with your healthcare provider. You don’t need to ask every question—choose the ones that are most relevant to your family.
Should we consider NPC?
Are there other conditions that could explain these symptoms?
Should my child see an NPC specialist?
Could genetic testing help explain my child’s symptoms?
What type of genetic testing would you recommend?
What happens if an NPC specialist recommends genetic testing?
If genetic testing confirms NPC, what happens next?
How can I best support my child while we’re looking for answers?
Reference: 1. Patterson MC, Clayton P, Gissen P, et al. Recommendations for the detection and diagnosis of Niemann-Pick disease type C: an update. Neurol Clin Pract. 2017;7(6):499-511. doi:10.1212/CPJ.0000000000000399
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