• Focused on patient communities:

    The role of patient advocacy

  • Your voice matters:

    A personal journey with rare disease

  • Working with and for you:

    A message from our CEO

  • Your voice matters:

    A personal journey with rare disease

  • You are not alone:

    Find resources and support

Making a Difference for Patients:

It’s Up to U

At Ultragenyx, we strive to incorporate patient and family voices into everything we do. Watch our video celebrating how U motivate and inspire us every day.

What is Patient Advocacy?

Patient advocacy serves as a point of connection between the patient community and a company or organization.

Learn More

Welcome

At Ultragenyx, the patient advocacy team is passionate about educating and supporting you: patients, families and caregivers affected by rare and ultra-rare diseases. Through this site you can find valuable resources, hear from others who live with rare diseases, and learn more about our commitment to the rare disease patient community.

Read Our Welcome Letter

Your Voice Matters: We are Listening

Michelle and Jake

Managing LC-FAOD Together

Braylee

Raising a child with LC-FAOD

Helen

An MPS VII Parent

Sandy

Living with GNE Myopathy

Valeria

Living with GNE Myopathy

Cheryl

Living with XLH

Briggs

Raising a Child with Glut1 DS

Tasia

Living with LC-FAOD

Dan

Living with TIO

David

Living with XLH

Eileen

Raising a Child with LC-FAOD

Lisa

Raising a Child with Glut1 DS

Tara

Living with GNE Myopathy

Maureen

Raising a Child with Glut1 DS

Upcoming Events

  1. Jun 6

    Global Genes RARE Drug Development Symposium

    Learn More
  2. Jun 8

    XLH Network Regional Meetup

    Learn More

View All Events

Featured Resources

Living with a rare disease can be challenging. Check out our Featured Resources page to find resources that can help you navigate the journey.

Learn More

All Events

  • Would you like to be updated as we post new patient journeys and resources?

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    You are now signing up to receive email updates and news from Ultragenyx. The emails you will receive are not intended to provide you with healthcare advice. Ultragenyx will not and does not provide healthcare advice. By registering for this email service, you understand that you are not disclosing any personal, private health information to Ultragenyx.

    You must be 18 years of age or older and a resident of the United States or its territories to register. By registering to receive these emails, you certify that you are 18 years of age or older, reside in the United States or its territories and are granting permission to receive general updates and news from Patient Advocacy at Ultragenyx.

    By providing your information you agree to allow Ultragenyx and its agents to collect the name and email address provided and to be contacted by Ultragenyx and its agents using this information in the future. Furthermore, you are agreeing that Ultragenyx and its agents may contact you by email. Ultragenyx will not sell, rent or otherwise distribute your name and email address provided.

  • Would you like to be updated as we post new patient journeys and resources?

    Join our mailing list

    You are now signing up to receive email updates and news from Ultragenyx. The emails you will receive are not intended to provide you with healthcare advice. Ultragenyx will not and does not provide healthcare advice. By registering for this email service, you understand that you are not disclosing any personal, private health information to Ultragenyx.

    You must be 18 years of age or older and a resident of the United States or its territories to register. By registering to receive these emails, you certify that you are 18 years of age or older, reside in the United States or its territories and are granting permission to receive general updates and news from Patient Advocacy at Ultragenyx.

    By providing your information you agree to allow Ultragenyx and its agents to collect the name and email address provided and to be contacted by Ultragenyx and its agents using this information in the future. Furthermore, you are agreeing that Ultragenyx and its agents may contact you by email. Ultragenyx will not sell, rent or otherwise distribute your name and email address provided.