Patient Voice - LBSL

We want to hear about your lived experience as a patient or caregiver to someone with LBSL.  

This is your space to share anything that might be helpful for us to know.  What support to you need?  What hopes do you have?  

We will also be using these responses to compile the collective community voice, to share with clinicians, researchers, and FDA regulators.  

You may answer as many or as few of the prompts as you would like.  

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* 1. What do you wish doctors and other healthcare providers knew about LBSL? 

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* 2. What do you wish research knew about LBSL?  Are there any research projects that you would like them to study?  

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* 3. What do you wish the FDA or other regulatory agencies knew about LBSL when they are considering approvals for future treatments?  

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* 4. What do you wish your friends knew about LBSL? 

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* 5. What do you wish your teachers (or your child's teachers) knew about LBSL? 

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* 6. Open-ended response - Tell us anything!

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* 7. If Cure LBSL could help with any resources that would make your life easier, what would you want? 

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* 8. Would you like someone from Cure LBSL to follow up with you?  

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* 9. Optional: Please tell us a little about yourself.  

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* 10. How old is the person (or people) with LBSL in your family?

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