When your child has a Zellweger spectrum disorder (ZSD)
Being a parent means being more
You are not just a “parent.” You are your child’s advocate and a critical member of their healthcare team. When raising a child with a Zellweger spectrum disorder, 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.
Yes, having your child diagnosed with a ZSD is scary but you are in the right place to get the information you need. ZSDs are rare, but more research is being done to build our understanding of the disease.
We do know ZSDs are lifelong, genetic, and affect many different parts of the body. We also know ZSDs affect each person differently.
Understanding the range of how these disorders 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
What does it take to manage a Zellweger spectrum disorder (ZSD)?
ZSDs are serious lifelong conditions. Unfortunately, no treatments exist yet that can cure ZSDs. However, there are options that can help manage the different symptoms and the way different organs are affected by the disease. Routine checkups are key to manage ZSDs properly, 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 ZSDs