Living Every Day with Rare Disease

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Are you affected by a rare disease? Do you care for someone with a rare disease?

If so, we need your knowledge and experience to shape the way that treatment, care and services are managed and delivered.

If you are:

  • Someone diagnosed with a rare disease or a suspected/probable rare disease;
  • A Carer for someone diagnosed with a rare disease or a suspected/probable rare disease;
  • A clinician or an Allied health professional or other Health and Social Care professional with a patient or client with a rare disease or a suspected/probable rare disease

we want to know about your experiences, good and bad!

Please help by taking part in the Engagement Exercise: Complete the Questionnaire online

The key element is the your story. Describe your experience: use the “triangles” to show how you felt about different aspects of the experience. You can describe as many experiences/incidents as you like, and use the triangles to show your feelings about each incident. The basic information about you has only to be completed once.

If you would prefer to complete the questionnaire either in a paper copy or by interview (over the phone or face to face), or if you have any queries, please email survey2014@nirdp.org.uk