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* 1. What is your/your family member's diagnosis?

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* 2. Do you/your family member have any other medical conditions?

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* 3. How long did it take for you/your family member to receive a correct diagnosis?

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* 4. Where do you live?

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* 5. How good do you feel your/your family member's main consultant knowledge about your condition(s) is?

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* 6. How good do you feel your/your family member's GP knowledge about your condition(s) is?

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* 7. Overall, how good do you feel the knowledge that other clinicians and healthcare providers (for example, physiotherapists, occupational therapists, psychologists) have about your/your family member's other healthcare knowledge about your condition(s) is?

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* 8. Overall how do you rate the provision of services for rare disease
patients in Northern Ireland? (This will include a comment box)

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* 9. Is there anything else you'd like to tell us - good or bad - about your experience of care for people with rare diseases in Northern Ireland?

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