Question mark icon What happens next?


Our PEL team will contact you by email or phone within one business day, based on the contact option you selected.

If you selected an email contact, be sure to check your spam folder for an email from [email protected] if you don’t find it in your inbox.


Your PEL will discuss questions, cover basic study eligibility, and provide information about current and future study opportunities.


If you meet the initial eligibility criteria, your PEL will connect you to an appropriate study site.

Your PEL will also ask permission to contact you in the future regarding any changes to current studies or future clinical or nonclinical research opportunities.

Rare disease family patient portrayal Rare disease family patient portrayal

Patient portrayal.

Join the rare journey, hear unique patient stories, and more

Wherever you are on your journey, there is always something new to learn. At the Ultragenyx Patient Advocacy site and our Facebook community page, you will meet a welcoming community of individuals on similar paths.

You will also find countless resources and tools. Read patient stories, hear about upcoming events, learn where to locate a patient group, and realize that you are not alone.

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