The patient advocacy team at Ultragenyx is passionate about educating and supporting you: patients, families and caregivers affected by rare and ultra-rare diseases. To find valuable educational resources, hear from others who live with rare diseases and more, please visit ultrarareadvocacy.com.
Focused on Patient Communities
What is the role of patient advocacy at Ultragenyx
The advocacy team understands the challenges facing many rare disease communities, including a lack of information and effective treatment options. We work with patient groups to provide communities with educational materials, and to ensure patients’ needs are shared within our company to guide our work.
Visit our website at ultrarareadvocacy.com to learn more about our commitment to you.
Your voice matters: We are listening
Living with GNE Myopathy
“I’m motivated to help others get speedier testing and diagnosis by connecting them with the right support groups and resources.”
Who is Ultragenyx?
Ultragenyx is a 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.
Patient Support Groups*
Ultragenyx works side by side with patient organizations that provide educational resources and support research to help people affected by
rare and serious disorders.
For information about disease-specific groups visit our Patient Support Resources page.
General Information about Clinical Trials
*These organizations are an incomplete listing of rare disease support organizations and are not controlled by, endorsed by, or affiliated with Ultragenyx Pharmaceutical Inc. The list is meant for informational purposes only and is not intended to replace your healthcare professional’s medical advice. Ask your doctor or nurse any questions you may have about your disease or treatment plan.
MRCM-UGNX-00007 June 2016