I have written an email to one of the authors of the article I have just published.
This is my email.
I have read with much interest your article on the overexpression of pleiotrophin in macrodactyly.
I am mother to a child with pedal macrotactyly (apparently of the static form) and I hold a blog on this condition (https://macrodactyly.wordpress.com/) aimed at helping people suffering from it or parents get information on this rare condition.
It is very difficult to find bibliography on macrodactyly (expecially recent articles like yours). Do you know if there are any other studies underway?
Thank you so much for your help and, on behalf of all parents with children suffering from this condition, thanks for doing research on this field.
And this is the answer I got only a few minutes later:
Thank you so much for your kind email and the link to your excellent blog. We are currently engaged in both clinical as well as basic biological studies into the cause (and potential treatment) of this disorder. There has been recent interest into the condition (http://www.ncbi.nlm.nih.gov/pubmed/23100325) and it seems that there is a biological relationship to a variety of overgrowth disorders. We are hoping to have both a clinical paper (our experience with hand macrodactyly) as well as a basic scientific manuscript published in the near future. In addition, we have applied for 2 grants to fund our studies. I have cc’d our research coordinator and we will be happy to send you copies of our work when we have them.
I will keep you posted with news