Resources

Champions are resourceful Resources

Being resourceful means having the right tools when you need them

No matter where your child is in her/his peroxisomal biogenesis disorder-Zellweger spectrum disorder (PBD-ZSD) journey, there’s going to be something more you need to know and do. Having the right resources can help you handle it.

Below are printable resources to help you initiate the conversations you need to have.

Be prepared

When you visit any doctor on your child's healthcare team, print and take this guide so you can get the most out of every appointment.

Learn more

This resource is intended to help get you started on the path to learning more about PBD-ZSD to help you be the best advocate you can be for your child.

Share recommended guidelines

These are the first management recommendations for people with PBD-ZSD. Make sure all of the doctors on your child's healthcare team have them.

Share guidelines

Patient and caregiver videos

What to expect if your child has Peroxisomal Biogenesis Disorder-Zellweger Spectrum Disorder?

What is Peroxisomal Biogenesis Disorder-Zellweger Spectrum Disorder?

How does Peroxisomal Biogenesis Disorder-Zellweger Spectrum Disorder, or PBD-ZSD, affect the liver?

How did my child get Peroxisomal Biogenesis Disorder-Zellweger Spectrum Disorder, or PBD-ZSD?

Click to see the NORD Zellweger Spectrum Disorders educational video

Champions need support

Community can be helpful, especially when caring for someone with such a complex disease. The following organizations below are here to help support you and your child. Reach out—you’re not alone.

The GFPD funds and promotes peroxisomal disorder research and assists families and professionals through educational programs and support services related to Zellweger spectrum disorders.

NORD is the leading organization committed to the identification, treatment, and cure of rare disorders through programs of policy, advocacy, education, research, and patient assistance.

Global Genes works to eliminate the challenges of rare disease faced by 350 million people worldwide, while unifying the rare community under a symbol of hope—the Blue Denim Genes Ribbon®.

ChiLDReN is a collaborative team of doctors, nurses, research coordinators, medical facilities, and patient support organizations working to advance understanding of rare liver diseases.

Other Useful Links

LiverAtoZSD

The Liver: A to ZSD is devoted to liver health awareness related to peroxisomal biogenesis disorder-Zellweger spectrum disorder (PBD-ZSD). This site was developed primarily for Parents or Caregivers. Free testing is available for PBD-ZSD patients.

ZSD Alliance

The Zellweger Spectrum Disorder Alliance comprises a dedicated team of physician specialists focused on managing and improving the care of patients with peroxisomal biogenesis disorder -Zellweger spectrum disorder or PBD-ZSD.

Zellweger Spectrum Disorder Stories

YouTube Channel Zellweger Spectrum Disorder Stories YouTube Channel is dedicated to providing clear and engaging videos about PBD-ZSD.

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