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This survey was developed by a US-based CLN1 family advocacy group, Taylor’s Tale, as an important part of an international project to better understand and advance CLN1 disease clinical care.

All answers will be kept confidential and anonymous. Summary results may be included in future posters or publications on approaches to caring for children and young adults with CLN1 disease.

Please access the survey by clicking the link below, and ensure only one person completes the survey per patient. If you wish you may work together with your family or other caregivers to complete a single survey. Because the survey is intended to be comprehensive, it includes ~60 questions and may take 60-90 minutes to complete.

If more than one child in your family has been affected by CLN1 disease, please fill out a separate survey for each. For bereaved parents or caregivers, please base your answers on the later stages of your child’s disease or from overall experience.

Important Process Steps
Please complete the survey at one time to ensure your responses are saved. If you close the survey you will have to start from the beginning. Please use only the previous and next buttons at the bottom of each page to navigate (not the web browser back/forward button). The survey will only be available until midnight on Wed 5 June 2019. Note: the survey refers to a deadline of Sunday 2 June; this has been extended for UK families.

For any questions about the survey, please contact Sharon of Taylor’s Tale on

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To make a donation please click the button to the right.  This link will then take you to a PayPal page where a donation direct to us can be made.

The amount you enter is your choice and PayPal can collect the funds from a debit or credit card account.

Thank you for your donation.