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.

Ultragenyx is a biopharmaceutical company committed to bringing to patients novel products for the treatment of serious rare and ultra-rare genetic diseases.

We understand the challenges facing many rare disease communities, including a lack of information and treatment options. The advocacy team works with patient groups to provide communities with educational materials, and to ensure patients’ needs are shared within our company to guide our work.

In the performance of our duties as representatives of the Ultragenyx Patient Advocacy team, we follow the PhRMA Principles on Interactions with Patient Organizations and the BIO Guiding Principles for Interaction with Patient Advocacy Organizations.

We hope to be a valuable resource on your journey with a rare disease.

Jessica Riviere, MHS
Vice President, Patient Advocacy, Patient Engagement, Global Medical Affairs
Ultragenyx Pharmaceutical Inc.
Kim Cohee, MS, CGC
Director, Patient Advocacy, Global Medical Affairs
Ultragenyx Pharmaceutical Inc.
Tom Pulles, MD
Vice President, EU Medical Affairs, Patient Advocacy
Ultragenyx Europe GmbH Basel, Switzerland
Kristin Voorhees, MA
Associate Director, Patient Advocacy, Global Medical Affairs
Ultragenyx Pharmaceutical Inc.
Belen Gonzalez Sutil, MA
Patient Advocacy Manager
Ultragenyx Latin America Argentina
Kristin Smith
Patient Advocacy Consultant, Global Medical Affairs
Ultragenyx Pharmaceutical Inc.