2025 KAND Family & Scientific Engagement Conference Interest Survey

Where? Boston, Mass., USA

The KAND Conference is currently planned for July 25 & 26, but the dates are not yet finalized.

KOALA study assessments will begin 2-3 days before the conference (July 22-24).

Please complete this survey to share your interest in participating in person.

This will help our team with planning.

Thank you!

Question Title

* 1. How likely are you to attend the 2025 KAND Family & Scientific Engagement Conference?

Very likely

Somewhat likely

Unsure at this time

Somewhat unlikely

I will not be attending the conference or KOALA study

I can only attend if the conference is offered virtually

Other (please specify)

Question Title

* 2. If you selected "Somewhat Unlikely" to attend or "I will not be attending the conference or KOALA study", please tell us why. Select all that apply.

Finances

We have other plans already

No childcare for our other kids

Can't take the time off work

Not interested

Other (please specify)

Question Title

* 3. Which of the following statements relates to you and your family?

We will only be coming for the KOALA Study

We will only be coming for the KAND Conference

We will attend BOTH the KOALA Study and KAND Conference

Question Title

* 4. How many people will be coming with you to Boston?

Just myself

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* 5. Of the number of travelers coming to Boston, how many will attend the study and/or conference?

Other (please specify)

Question Title

* 6. Conferences are very expensive to host (over $100,000 USD). IF the organization decides to charge a registration fee (excluding KAND patients and children 3 and younger), what amount would you feel comfortable paying per person?

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* 7. Where are you likely to stay in Boston?

Hotel

AirBNB or something equivalent

With family or friends

Question Title

* 8. If the organization is able to get a room block at a discounted rate, how likely would you stay at the hotel where the study and conference is being held?

Very likely

Somewhat likely

Unsure

Somewhat unlikely

Unlikely

Question Title

* 9. When attending the KOALA study, which would you prefer?

Do all of the assessments in 1 day

Split my assessments over 2 days

Question Title

* 10. Which topics are you looking forward to? Check all that apply.

KAND Symptoms, Natural History Study, and Care Recommendations

Organizational Update of Plans and Goals

Scientific Updates from Research Members

Therapeutic Development (gene based therapies, small molecule)

Fundraising Plans and Goals

Patient and Caregiver Breakout Sessions

Scientific Roundtable Breakout Sessions

KAND Policy and Advocacy topics

Other (please specify)

Question Title

* 11. Please rank the following aspects of this conference based on how important they are to you. Top of the list (1) is the most important. Bottom of the list (7) is the least important.

Question Title

* 12. How do you prefer to learn at the conference? Please select up to 2

Workshops/Interactive Sessions

Keynote Speakers

Panel Discussions

Question and Answer

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* 13. Would you be open to sharing or being part of a panel at the conference?

Yes

If yes, please provide name, phone number, and email.

Question Title

* 14. What is your role?

Patient

Parent/Caregiver of KAND patient

Clinician

Researcher/Scientist

Community Supporter

Biotech Industry

Other (please specify)

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* 15. Do you need translation services while attending the conference or KOALA study?

Yes

If yes, please list your preferred language.

Question Title

* 16. What platform do you check most often for updated information in the community?

Facebook

Instagram

Website

I never check

2025 KAND Family & Scientific Engagement Conference Interest Survey

Where? Boston, Mass., USA

Question Title

* 1. How likely are you to attend the 2025 KAND Family & Scientific Engagement Conference?

Question Title

* 2. If you selected "Somewhat Unlikely" to attend or "I will not be attending the conference or KOALA study", please tell us why. Select all that apply.

Question Title

* 3. Which of the following statements relates to you and your family?

Question Title

* 4. How many people will be coming with you to Boston?

Question Title

* 5. Of the number of travelers coming to Boston, how many will attend the study and/or conference?

Question Title

* 6. Conferences are very expensive to host (over $100,000 USD). IF the organization decides to charge a registration fee (excluding KAND patients and children 3 and younger), what amount would you feel comfortable paying per person?

Question Title

* 7. Where are you likely to stay in Boston?

Question Title

* 8. If the organization is able to get a room block at a discounted rate, how likely would you stay at the hotel where the study and conference is being held?

Question Title

* 9. When attending the KOALA study, which would you prefer?

Question Title

* 10. Which topics are you looking forward to? Check all that apply.

Question Title

* 11. Please rank the following aspects of this conference based on how important they are to you. Top of the list (1) is the most important. Bottom of the list (7) is the least important.

Question Title

* 12. How do you prefer to learn at the conference? Please select up to 2

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* 13. Would you be open to sharing or being part of a panel at the conference?

Question Title

* 14. What is your role?

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* 15. Do you need translation services while attending the conference or KOALA study?

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* 16. What platform do you check most often for updated information in the community?

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* 17. If you have any other comments, please write them here.

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* 18. Please provide your email address for further communication.