New England Community Interest Survey_2025

The New England Community is excited to support you! We are currently planning opportunities for learning and connection and would love to hear what topics and activities matter most to you and your family. Your feedback will help us create meaningful events that meet our community's needs.

Please take a few minutes to share your thoughts with us.

If you’d like to connect with our local volunteer in New England, please email Dean at newengland@pkdcure.org.

1.How long have you been involved with the New England community?

Under 1 year

2 - 3 years

4 - 5 years

6+ years

I have never attended a New England event

2.How are you interested in participating with the New England community? (check all that apply)

I would like to attend discussion meetings in person

I would like to attend speaker meetings in person

I would like to attend speaker meetings online

I would like to attend social / fundraising events

I would like to personally fundraise

I would like to share my PKD journey at a community meeting

I would like to volunteer

Other (please specify)

3.Please help us in planning future programs in your area by indicating topics that would interest you. (check all that apply)

Nutrition

Genetics overview

New and notable research

Clinical trial opportunities

Dialysis

PKD and polycystic liver disease (PLD)

Pain management options

PKD and children

Living donor process overview

How to work with a nephrologist

Ask the nephrologist panel

Transplant process / what to expect

How to fundraise for the PKD Foundation

PKD Foundation mission and vision

How to be your own best advocate (checklists, what to monitor, what tests do you need)

Mental health and PKD

Other (please specify)

4.Please share any additional comments about programs you would like to have available to PKD patients and families in New England.

5.What is the best timing for you to attend community activities? (choose all that apply)

Weekday - afternoons (noon -3 pm)

Weekday - evening (6 pm - 8 pm)

Saturday morning

Saturday afternoon

Sunday morning

Sunday afternoon

Other

Current Progress,

0 of 5 answered

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