We Provide Worldwide Support and Research to families with Peroxisomal Disorders. 

At The GFPD, we want all of our families to to have the opportunity to get connected and to feel comfortable in a safe space with people who understand your daily journey.  In order to ensure that we are able to do that, we request that you fill out just a few questions on the form below to give us more information about your family.

The Global Foundation for Peroxisomal Disorders maintains the most comprehensive list of patients with a peroxisomal disorder in the world.  Our Family Directory (formerly known from 2010-2018 as the GFPD Family Registry) is a comprehensive and secure database. We have grown our Family Directory from just 48 families in 2010 to nearly 500 patients and their caregivers in 2018.

Joining our Family Directory allows the GFPD to:
  • Stay in touch with you.

  • Connect you with resources and other families in your area.

  • Most importantly, once you complete the GFPD Family Directory form and we have verified your identity, we will give you access to our private Facebook support group*!

    • The support group is strictly for parents or caregivers of children diagnosed with a peroxisomal disorder.

    • Every effort is made to make it a safe space for you. We strive to foster a community of support, promoting mutual respect and understanding without judgment.

To read our full Privacy Policy, click here.

*In order to join the Family support group, you must first join our Family Directory.

Beyond our private Facebook support groups, there are multiple ways to connect with the GFPD.
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Like our public Facebook page

Follow us on Twitter and Instagram

Sign up for the Natural History Study at McGill University

Email: pbd.genetics@mcgill.ca

Meet the GFPD family by visiting our YouTube Channel

 

Again, thank you for reaching out to the GFPD. We look forward to connecting you with our community of families.  
 

If you have any questions while completing the Family Directory or encounter any challenges, please contact: registry@thegfpd.org

© 2018 by GFPD. Proudly created by CAZ Media Design

 Images on this site were contributed by families and may not be used without permission.

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