Updated as of October 15, 2026 (11:00am ET)
Do you want to help shape the future of treatments for sickle cell disease (SCD)?

On January 27, 2027, the Sickle Cell Voices Alliance, a partnership among the Sickle Cell Disease Association of America, Inc., the Sickle Cell Disease Association of Canada and the Sickle Cell Society, UK, is hosting an Externally-Led Patient-Focused Drug Development meeting about sickle cell disease (SCD). This is an opportunity for the U. S. Food and Drug Administration (FDA) and other key stakeholders and regulatory authorities to hear directly from sickle cell warriors and caregivers about how living with SCD affects their daily lives and treatment preferences.

We want to amplify the comments that will be made at this virtual meeting by surveying the community to share many perspectives with the FDA and other key stakeholders and regulatory authorities.

Please take our 10-minute survey below - this survey is only for sickle cell warriors and caregivers. Thank you for helping to shape the future of SCD treatments!
Topic 1: About You / Your family member

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1. Are you a parent or caregiver of a person living with SCD or do you yourself have SCD? Select only one. (Required.)

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2. What type of SCD do you / does your family member have? Please select one. (Required.)

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3. What is your or your family member’s age? (Required.)

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4. What country do you live in? (Required.)

Topic 2: The effects of living with SCD that matter most to you

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5. What symptoms have the most significant impact on your/your family member’s life? Select up to three. (Required.)

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6. What complications have the most significant impact on your/your family member’s life? Select up to three. (Required.)

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7. Which activity or activities are you / your family member unable to do or not do as well as you / your family member would like, because of living with SCD? Select all that apply. (Required.)

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8. How has your / your family member’s condition and its symptoms changed over time? (Required.)

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9. Please explain how your / your family member’s SCD symptoms have changed over time.

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10. Would you define your /your family member’s condition as well managed? (Required.)

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11. What worries you most about your / your family member’s SCD? Select all that apply. (Required.)

Topic 3: Perspectives on current approaches to treatment

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12. How do you / your family member currently treat your / your family member’s SCD or its symptoms? Select all that apply. (Required.)

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13. Overall, how well do these treatments work for you / your family member? (Required.)

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14. How has your treatment regimen changed over time? (Required.)

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15. What are the most significant advantages of your treatments and how do they affect your daily life? Select all that apply. (Required.)

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16. What treatment has had the most positive impact on your life? (Required.)

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17. What are the most significant disadvantages or complications of your / your family member’s current treatments? Select all that apply. (Required.)

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18. What aspects of your / your family member’s condition are not improved by your / their current treatment regimen? Select all that apply. (Required.)

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19. If you could create your / your family member’s ideal treatment, what would it do (i.e., what specific things would you look for in an ideal treatment)? Select all that apply. (Required.)

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20. If you / your family member had the opportunity to participate in a clinical trial studying experimental treatments, what things would you consider when deciding whether or not to participate? (Required.)

The following questions will not be used to identify you, but will only be used to prevent duplicate submissions:

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21. What is your or your family member’s birth date (month and date only, i.e., February 10th)? (Required.)

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22. What is your zip code? (Required.)

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