This form is provided by Ultragenyx Pharmaceutical Inc. ("Ultragenyx"), together with its employees, affiliates, and authorised service providers. Ultragenyx is responsible for deciding how your personal data is used (the "data controller").

This form may be completed by:

1. the patient personally, or
2. the patient's parent, caregiver, or legal guardian if the patient is a minor or otherwise unable to provide consent.

If you are completing this form for someone else, all references to "you/your" should be read as referring to the patient.

1. Contact details (name, phone number, email).
2. Information about your health, including confirmation that you have been diagnosed by a qualified medical professional with a specific disease for which Ultragenyx is conducting or will conduct a clinical trial.
3. Medical information provided by your treating physician (if you consent to Ultragenyx contacting them).

1. To assess potential eligibility for a clinical trial (prescreening).
2. To inform you of future research opportunities.
3. To comply with legal, ethical, and regulatory obligations related to clinical research.

Ultragenyx relies on your explicit consent to process health-related data.

You may withdraw your consent at any time. To do so, please contact us directly at [email protected] and include "Opt out" in the subject line.

Your personal data may be transferred outside your country (for example, to the United States, where Ultragenyx is headquartered). Where this happens, Ultragenyx will implement safeguards to ensure your data remains protected.

Your data will be kept only for as long as necessary to fulfil the purposes described above, or to meet regulatory record-keeping requirements.

You have the right to:

1. withdraw your consent at any time (without affecting processing carried out before withdrawal),
2. access and receive a copy of your personal data,
3. request correction of inaccurate data,
4. request erasure of your data (where legally possible),
5. request restriction or object to processing,
6. lodge a complaint with your local Data Protection Authority.

For more information about your rights and our practices, see our Privacy Policy.

By submitting this form, I confirm that:

1. I am not a resident of the United States (or the patient on whose behalf I am completing this form is not a resident of the United States),
2. A qualified medical professional has diagnosed me (or the patient) with the condition for which Ultragenyx is conducting or will conduct a clinical trial, and
3. I have read and understood the information above.