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The Emotional Impact of Living with a Rare or Undiagnosed Condition

16 November 2017

Do you have a rare or undiagnosed condition? OR are you a parent or carer of someone with a rare or undiagnosed condition?

Living with a rare or undiagnosed condition can have a huge impact on patient and families. However, Rare Disease UK's recent patient experience report has shown that many individuals are not getting the emotional support they need. In order to gain greater understanding of the relationship between mental health and rare disease, they would like you to fill in their online survey so that they can find out more about:

  • Your experiences of living with a rare or undiagnosed condition, or caring for somebody with a rare or undiagnosed condition, and particularly the emotional impact this has had.
  • Your thoughts about accessing psychological and emotional support services.
  • How you think things could be improved.

The survey should take around 20-30 minutes to complete, and will be completely anonymous. The survey will be open until Sunday 10 December.

Take the survey