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Please complete the form below to let us know what you think about UltraRareAdvocacy.com and what you want to see on the site or in our email newsletters in the future. By filling out this survey you agree to our Privacy Policy.
Please note, this survey is not the appropriate channel to report any side effects, product complaints, or adverse events associated with any Ultragenyx clinical trial or commercial marketed product. If you believe that you have experienced a side effect (adverse event), contact your physician immediately. To appropriately report side effects, a product complaint or an adverse event:
  1. Contact Ultragenyx at ultragenyx@primevigilance.com.
  2. Contact the U.S. Food and Drug Administration at www.fda.gov/medwatch or call 1-800-FDA-1088. If you do not reside in the United States, consult your physician.
1. What was your purpose for visiting UltraRareAdvocacy.com today? If you were looking for something specific, did you find it?

Browsing general news/updates and I was satisfied with the informationBrowsing general news/updates and I was not satisfied with the informationLooking for specific information and found what I was looking forLooking for specific information and did not find what I was looking for

2. How helpful is UltraRareAdvocacy.com when it comes to providing resources for those affected by rare disease?

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3. How easy to use and navigate is UltraRareAdvocacy.com?

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4. What do you like most about UltraRareAdvocacy.com?

5. What could we do to improve UltraRareAdvocacy.com?

6. Which type of content on UltraRareAdvocacy.com do you find most useful?

EventsPatient journeysDisease informationSupport organizations and advocacy groupsEducational/informational resourcesInformation about Ultragenyx patient advocacyOther

7. Has any of the information on UltraRareAdvocacy.com helped to inform a decision you’ve made? If so, please elaborate.


8. How did you find our site?

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9. How frequently do you visit UltraRareAdvocacy.com?

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10. Do you plan on returning to UltraRareAdvocacy.com? If not, why?


11. Are you signed up for our quarterly patient advocacy email newsletter?

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12. If you selected “yes,” on the previous question, how helpful is the patient advocacy email newsletter when it comes to providing resources for those affected by rare disease?

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13. Have you ever visited our Facebook site? If so, how often do you visit?

Yes, dailyYes, weeklyYes, monthlyYes, yearlyI don’t have FacebookNo, I have not visited yet

14. How often do you search for information, news, and topics about rare disease?

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15. What condition are you most interested in?

16. Is there a rare disease topic you want more information about?

17. Have you or a loved one been diagnosed with a rare disease?


18. At what meetings or events have you engaged with Ultragenyx Advocacy?

19. Please share any additional feedback you might have about UltraRareAdvocacy.com, our email newsletters, or our Facebook site.