What is Patient Advocacy?

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

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.

Your Voice Matters: We are Listening

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

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.