About oneXLHvoice

About oneXLHvoice

 Welcome to the oneXLHvoice community – an X-Linked Hypophosphatemia (XLH) community tailored to you! oneXLHvoice was created to transform the health of those impacted by X-Linked Hypophosphatemia through a collaborative digital platform that provides greater disease knowledge, emotional support and empowerment.oneXLHvoice has three unique features:

  • A professionally vetted library of content called Trusted Resources
  • A Social Wall that provides a safe environment for community driven conversations moderated by a disease-knowledgeable Community Leader
  • A Diagnosis Educator that provides you with information that will help you manage your disease diagnosis and support resources

This innovative digital education platform was developed in collaboration with Ultragenyx and several Brazilian Patient Advocacy Groups. Building off of rareLife’s “onevoice” community technology, our partners guided the customization of the platform by identifying knowledge gaps, sharing information preferences, and continually engaging their networks for additional insights. While the platform is made possible through an Ultragenyx sponsorship and is part of their mission to offer access to quality resources to advance the health of people impacted by XLH, Ultragenyx does not own or control oneXLHvoice.

The data that are gathered through the oneXLHvoice platform are used only for feedback and analysis to make this community platform even better. The data are used in accordance with our privacy policy and will not be used by any other parties without first consent from our platform community.

We hope you find the benefits of the oneXLHvoice platform helpful to you and your family.

Sincerely,
The oneXLHvoice Team

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