#anecdotesintoevidence #mothersday

Maria Picone
Maria Picone

As mother day approaches, one of our TREND Community members reminded us today that rare disease can have a huge impact on the mother/child relationship. She asked some very powerful questions and we would like to extend them to all of our rare disease groups.

If you are a child living with a rare disease, how has the disease affected your relationship with your mother?

If you are a parent of a child with a rare disease, how do you think your child’s diagnosis has shaped your relationship with him/her?

If you have other children, how do you think rare disease has impacted their relationship with you?

In a few words how has living with rare disease impacted your family?

Please feel free to share any other thoughts relevant to this topic.

If you would like to participate, please login to TREND and begin a new journal entry with #mothersday. If you are not yet a member of TREND Community, you can join on our web page www.trend.community (scroll to the bottom and request an invitation).

At the end of the week we will post a blog about the data that we collect and summarize your answers in an infographic. Participation will be anonymous and only summary data will be shared. TREND Community output cannot be linked back to individual participants and individual experiences are never shared without permission.