Dos and don’ts when making a Consumer Comment.

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Don’t cut and paste

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Tell your story

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Don’t give general information

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Be specific

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Don’t give incidence

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Explain what impact it had on you if it is a rare disease or condition

(e.g. was it hard to find expert clinicians, information, get diagnosis?)
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Don’t say ‘difficulty managing side effects’

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Explain what the side effects are/were and what that meant for daily life

(e.g. I could not work, I could not shop for food, my partner had to give up work to look after me so we both were out of work)
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Don’t explain the condition

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Explain the reality of living with the condition

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Don’t explain the treatment

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Explain the reality of having (or not having) treatment

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Don’t submit clinical data

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Submit what happens in the real world

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Don’t submit published literature and stats

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Consider collecting and contributing to studies that answer the questions you think are most important

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