Role of Patient Advocacy

Ultragenyx Patient Advocacy

The advocacy team works with patient organizations to understand and represent the views of patients.

We strive to provide valuable information, educational materials and resources to the communities we serve. Your input also helps guide our company’s clinical development programs.

Together we share a common commitment of improving the lives of everyone affected by rare diseases.

Patient Advocacy in Action

Ultragenyx Patient Day

Ultragenyx Patient Day celebrations

Ultragenyx Patient Day

Ultragenyx Patient Day: Dedicating a conference room to a woman living with rare disease

Global Genes World 2016

At WORLD Symposium with Global Genes

Noah’s Room Dedication at Ultragenyx Patient Day 2016

At the EURORDIS gala with patients living with rare diseases

With Massimiliano Barone, President of Associazione Italiana GLUT1, at the EURORDIS gala

Kim Mooney, Ultragenyx Patient Advocacy, and Yuriko Oda, president of the Patients Association for Distal Myopathies (PADM) at the Neuromuscular Disease Foundation meeting

Kim Mooney, Tara and Lale’ Welsh come together at the 2016 RARE Patient Advocacy Summit