When your child has peroxisomal biogenesis disorder-Zellweger spectrum disorder (PBD-ZSD)

Being a parent means being more

You are not just a “parent.” You are your child’s advocate and a critical member of the healthcare team. When raising a child with PBD-ZSD, you have to be an expert, an investigator, and a champion.

Get started by downloading and sharing the latest care guidelines with your child’s healthcare team.

Free genetic testing for PBD-ZSD

Identifying your child’s illness is a critical step in determining the appropriate way to manage the disease – the earlier the better. A free genetic test is available to qualifying patients that can help diagnose PBD-ZSD. This test can provide valuable genetic information even if your child has already been diagnosed. Ask your doctor if your child may be a candidate for this test.

Because PBD-ZSD is an inherited disease, genetic testing may also be beneficial for siblings and other family members.

Learn more about this test and get an informational flyer to share with your doctor.

Download flyer

Know your child’s disease

Peroxisomal biogenesis disorder-Zellweger spectrum disorder (PBD-ZSD)

Yes, having your child diagnosed with PBD-ZSD is scary, but you are in the right place to get the information you need. PBD-ZSD is rare, but more research is being done to build our understanding of the disease.

We do know PBD-ZSD is lifelong, genetic, and affects many different parts of the body. We also know it affects each person differently.

Understanding the range of how this disorder can affect people is an important step toward learning how to best manage the condition.

Download this doctor discussion guide to foster a meaningful conversation with your child’s healthcare team.

Discussion guide

Every evaluation is critical

What does it take to manage PBD-ZSD?

PBD-ZSD is a serious, lifelong condition. Unfortunately, no treatments exist to cure PBD-ZSD. However, there are options that can help manage the different symptoms and the way different organs are affected by the disease. Routine check-ups are key to properly managing PBD-ZSD, giving people their best chance to improve their quality of life.

Work with multiple specialists to monitor and manage your child’s symptoms so you can make the most positive impact possible on your child’s day-to-day life.

You are your child’s champion – learn how to best manage PBD-ZSD.

Manage PBD-ZSD