A couple of weeks ago, I was contacted by someone from the non-profit organisation Genetic Alliance. I presume that this person came across Maddy's blog and invited me to participate in a survey they are currently doing. They are surveying families with children with congenital conditions that were diagnosed either prenatally or in the first year of life. They are surveying not only parents, but also other relatives and caretakers too. I know there may be other families who are reading this blog who may be interested in this survey - my opinion (and one of the reasons why I started this blog) was that as we share our experiences, hopefully we can support some other families who are yet to go through the same issues!
If you are interested in the survey, you can read more about it here.
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