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 clinical-stage biopharmaceutical company committed to bringing to market novel products for the treatment of rare and ultra-rare diseases, with a focus on serious, debilitating genetic conditions.

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.

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

Kim Mooney, MS, CGC
Associate Director, Patient Advocacy, Medical Affairs
Ultragenyx Pharmaceutical Inc.
Tom Pulles, M.D.
Head of Advocacy, Europe
Ultragenyx Europe GmbH
Basel, Switzerland
Kristin Voorhees, MA
Senior Manager, Patient Advocacy, Medical Affairs
Ultragenyx Pharmaceutical Inc.