THE EMOTIONAL IMPACT OF LIVING WITH A RARE OR UNDIAGNOSED CONDITION
YOUR CHANCE TO TAKE PART IN RESEARCH
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, our 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 we would like your help.
WHAT WILL TAKING PART INVOLVE?
This study involves taking part in an online survey, so that we 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.
We think the survey will take around 20-30 minutes to complete, and will be completely anonymous. The survey will be open until Sunday 10 December.
This project is funded by public donations to Rare Disease UK. To help us to continue to conduct vital research, text RDUK01 £5 to 70070 to donate £5 to Rare Disease UK – and make a difference today. JustTextGiving by Vodafone.
If you would like us to publicise any of your activities to our membership, or have any other questions or comments about this newsletter, please get in touch!