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

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-FOAD

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 Resource

Global Genes’ RARE Toolkits provide information about a variety of topics related to living with rare diseases. Topics include genetic testing, discussing rare disease with your loved ones, advocating for your child at school, exploring treatment options and more.