I am a:

1 of 10

On a scale of 1 to 5, how would you rank the existing
PNH support resources available to you?

Slide the circle left or right

2 of 10

What area of your life would you most like to receive additional support?

To rank your answers, click on the circles in order (most important first)

0

Communicating with others about living with PNH

0

Engaging in daily life with PNH

0

Maintaining a healthy mindset as a person living with PNH

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Who would you most like to improve communications with?

To rank your answers, click on the circles in order (most important first)

0

Partner/spouse

0

Children

0

Other family members

0

Friends

0

Co-workers/employer

0

Healthcare professionals

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What aspect of life with PNH is most challenging for you?

To rank your answers, click on the circles in order (most important first)

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Day-to-day tasks

0

Parenting

0

Managing my career

0

Staying active

0

Setting boundaries with others

0

Giving myself permission to say no

0

Socializing

0

Participating in major events, like holidays

0

Other?

Max characters: 50

3 of 10

What aspect of daily life with PNH is most challenging for you?

To rank your answers, click on the circles in order (most important first)

0

Feeling confident and empowered

0

Feeling focused

(ex: on work or daily tasks)

0

Feeling resilient when things are difficult

0

Maintaining mental health and wellness

0

Finding trusted and accessible resources

0

Other?

Max characters: 50

4 of 10

What aspect of communication is most difficult for you?

To rank your answers, click on the circles in order (most important first)

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Easily explaining PNH

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Having honest conversations about how PNH impacts me and my daily life

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Advocating for my needs

0

Feeling connected to friends or family

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0

Other

4 of 10

What resources would be most helpful in your daily life with PNH?

Select all that apply

4 of 10

What resources would be most helpful in your daily life with PNH?

Select all that apply

5 of 10

What resources would be most helpful in your daily life with PNH?

Select all that apply

5 of 10

Are there any other challenges related to engaging in life with PNH you’d like to share?

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5 of 10

Are there any other challenges related to maintaining mental health and wellness that you’d like to share?

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Are there any other challenges or suggestions regarding communicating with others you’d like to share?

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Are there any other resources that would be helpful in your daily life with PNH?

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6 of 10

Are there any other resources that would be helpful in your daily life with PNH?

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7 of 10

When thinking about new resources, who would you most like to learn from?

Select all that apply

8 of 10

How would you like to receive this support?

Select all that apply

9 of 10

What format would be most useful to you?

Select all that apply

10 of 10

I was diagnosed with PNH:

1 of 7

As a caregiver, do you feel like you have useful information available to you to help you better care for both yourself and the person in your life with PNH?

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Are there any topics you would like more information on?

To rank your answers, click on the circles in order (most important first)

0

What PNH is

0

How to communicate effectively with healthcare professionals

0

Emotional well-being

0

Setting boundaries and saying no

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How PNH affects the body

0

How to navigate insurance issues

0

Peer support

0

Other?

Max characters: 50
0

How best to support someone with PNH

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Self-care

0

Balancing care for myself and my loved one

2 of 7

What topics related to daily life with PNH would be most helpful?

To rank your answers, click on the circles in order (most important first)

0

What PNH is

0

How to communicate effectively with healthcare professionals

0

Emotional well-being

0

Setting boundaries and saying no

0

How PNH affects the body

0

How to navigate insurance issues

0

Peer support

0

Other?

Max characters: 50
0

How best to support someone with PNH

0

Self-care

0

Balancing care for myself and my loved one

3 of 7

When thinking about new resources, who would you most like to learn from?

Select all that apply

4 of 7

How would you like to receive this support?

Select all that apply

5 of 7

What format would be most useful to you?

Select all that apply

6 of 7

What area of your life would you most like to receive additional support?

To rank your answers, click on the circles in order (most important first)

0

Communicating with others about PNH

0

Engaging in daily life while caring for a loved one with PNH

0

Maintaining a healthy mindset

Max characters: 0/50
0

Other

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The person I care for with PNH was diagnosed:

1 of 5

How would you define yourself?

Click icon to select

2 of 5

Which resources do you think would be most helpful for people living with PNH?

To rank your answers, click on the circles in order (most important first)

0

Easily understandable information about PNH and how it affects the body

0

Tips for self-care

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How to best advocate for themselves

0

Communicating about PNH to others

0

Maintaining balance and emotional well-being

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Other?

Max characters: 50

3 of 5

What format do you think would be most useful?

Select all that apply

4 of 5

Who do you think would be the most relevant author of these new resources?

Select all that apply

5 of 5

Based on your experiences, what do you believe would be most helpful to people with PNH?

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Thank you!

We really appreciate your input. If you haven't already, please sign up to stay connected and be matched with your local Community Liaison (we like to call them CLs for short). Your CL is your local dedicated resource available to answer questions and help you navigate life with PNH. You'll also receive updates about new resources and tools for the community.

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