We Provide Worldwide Support and Research to families with Peroxisomal Disorders.
At The GFPD, we want all of our families, extended families, and adult patients, 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 over 500 patients and their caregivers in 2020.
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.
*In order to join the Family support group, you must first join our Family Directory.