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Behind the diagnosis

Survey: Visible or Invisible? Your Experience Matters

Thank you for taking the time to complete this survey.

This survey is open to anyone who has ever been diagnosed with a disease, disorder, or medical condition. It does not matter whether your condition is visible or invisible, genetic or non-genetic, chronic or temporary.

The findings will be used in my presentation at the World Orphan Drug Congress to help provide a better understanding of the differences in experiences, access to care, treatment, and support.

Your responses are anonymous, and the survey takes approximately 8–10 minutes to complete.

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Survio
1

About you

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2

Gender

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3

Which country do you currently live in? Please also indicate your region, state, or province.

4

Have you received an official diagnosis?

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5

Has your condition been genetically confirmed?

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6

Is your disease or condition considered rare?

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7

This question is about the visibility of your disease or medical condition. (If not applicable, leave this field blank)

Allocate 100 punten
Visibility in my appearance
0
0
100
Visibility due to my assistive devices
0
0
100
8

How long did it take to receive your diagnosis?

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9

Were you born with this condition?

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10

Did you feel that your concerns were taken seriously during the diagnostic process?

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11

Do you have access to the treatment you need?

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12

Have you ever been treated differently because your disease or condition is visible or invisible?

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13

If you answered "Yes" to the previous question, could you please tell us more about your experience?

14

Do you experience misunderstanding from others?

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15

To what extent do you feel that people underestimate your disease or condition? 0 = not at all, 10 = completely

Gebruik alleen cijfers
16

To what extent do you feel that people see your disease or condition rather than you as a person? 0 = not at all, 10 completely

Gebruik alleen cijfers
17

Does your disease or condition affect your mental health?

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18

Have you ever been offered psychological or mental health support?

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19

Did you feel you needed psychological or mental health support?

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20

Do you think researchers pay enough attention to your disease or condition?

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21

What do you consider to be the biggest challenge of living with your disease or condition?

22

What message would you like to share with healthcare professionals, researchers, and policymakers?

23

May I contact you by email if I have any follow-up questions after reviewing your responses? Please note that if you choose to provide your email address, your participation will no longer be anonymous. However, any personal information you share will be treated confidentially, and all data will be processed and presented anonymously.

Schrijf een e-mail in het juiste formaat

Thank you for taking the time to complete this survey.

By collecting information from people with a wide range of diseases and conditions, this survey makes it possible to compare experiences between, for example:

- Visible and invisible conditions

- Genetically confirmed and non-genetic conditions

- Rare and non-rare conditions

- Children and adults

- Differences in mental health, access to care, diagnostic delays, and experienced stigma

This broader approach provides a much deeper understanding than simply asking whether a condition is visible or invisible. It allows us to identify where differences exist and how visibility and genetic recognition influence the experiences of people living with a disease or condition.

Thank you for contributing to this important project. Your voice and experience will help create a more complete and representative picture for my presentation at the World Orphan Drug Congress and future discussions on research, healthcare, and policy.