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Who is filling out this form?
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Parent, guardian, or primary caregiver to individual with FA
Adult individual with FA
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Demographic information on race and ethnicity is collected in order to ensure that we are providing services that are accessible to and inclusive and representative of the entire FA community. This data will be used to identify gaps in services and support those who may be underserved. It will be housed in a secure database with your contact profile and will be used for internal purposes only.
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Confidentiality Statement: Information collected on this registration form will be protected and stored in a secure contact database. Information will only be accessible by FARF staff with clearance to access the information for communication and internal purposes only. This information will be stored indefinitely, unless requested otherwise. You may request to have your contact profile information removed from the contact database at any time by submitting a request to
info@fanconi.org
Informed consent: By completing this registration form, you agree that you have read and understood the confidentiality statement and purpose of the registration form, and voluntarily agree to register for Fanconi Anemia Research Fund, Family Services.