Parents and family members have told us once their loved ones have passed on they no longer feel part of the Duchenne community as they were before. They have lost that connection that supported them for many years.
We would like to understand what you think about the End of Life and Bereavement support available to you within the Duchenne community.
Our Survey is open to
- those who are bereaved
- those who have had, or yet to have, discussions around end of life with their loved ones
You may be a
- spouse or partner
- parent
- sibling
- family member
We would also like adults living with Duchenne to take part in our survey.
If you have any questions about the survey please contact angela@actionduchenne.org
