I hope that the following list of websites containing information about microcephaly will help you. I will be updating this page regularly so please come check out my site always.
Foundation for Children with Microcephaly – This site was created to connect families dealing with microcephaly. This was the very first site I visited after we were told of Miguel’s diagnosis. I am not sure if it’s still regularly updated but I think it’s still worth visiting.
National Organization for Rare Disorders – This website contains information about rare disorders and their symptoms. I stumbled upon this site when doing my research on Galloway-Mowat syndrome which I suspect my baby has.
Microcephaly Support Group – I found this Facebook page when looking for a parent support group for those whose children have microcephaly. Please visit the page and join. There are many amazing parents there who are willing to share information!
PubMed US National Library of Medicine – This is my go to site when doing my research on Galloway-Mowat syndrome. There is a vast wealth of medical studies on children with microcephaly and other disorders.
The Mighty – This is a place where I find very good articles on parenting. There are inspiring stories there which I’m sure you’ll enjoy reading.
Epilepsy Foundation – This is a site I found while researching about Miguel’s epilepsy. It contains helpful tips in managing seizures.
Loida’s Journey Out of Silence – This is the story of a girl who was born with a genetic defect which left her unable to communicate with others. The article was written by her mother and was an account of how she was able to “break out of silence.”