About PXE Registry

PXE International is a non-profit organization founded to accelerate research and provide support for individuals affected by Pseudoxanthoma Elasticum (PXE).

PXE is a rare genetic condition that causes calcification of elastic fibers in the skin, eyes, and vascular system. Through collaborative efforts, PXE International aims to improve quality of life for patients and advance the understanding of this condition.

Our Mission

Our mission is to initiate, fund, and support research aimed at discovering treatments and a cure for PXE, while offering resources, advocacy, and community building for those impacted by the disease.

What We Do

• Maintain and operate a comprehensive registry

  Support research efforts by collecting permissioned health information over time.

• Fund scientific studies and clinical trials

  Help advance new ideas and practical paths toward better care.

• Provide education and advocacy

  Share resources for individuals with PXE and their families.

• Foster a global community

  Bring together patients, caregivers, clinicians, and researchers to collaborate and support one another.

Join Us

By engaging with PXE International, you become part of a dedicated effort to transform the future for individuals living with PXE. Whether you are a patient, caregiver, researcher, or supporter, your contribution makes a difference.

Who runs this registry?

This registry is organized by PXE International, Inc.. If you have questions, use the contact information provided in the site navigation.