its quite appalling that as an advocacy group for people living with the rare genetic condition called ectodermal dysplasia' we cant access data from relevant government health institutions to ascertain the exact number of people living with condition in the country. The way pediatric departments of teaching hospitals hoard the info ehn, you would think its a ticket to heaven. and the bureaucratic bottlenecks associated with just accessing info on these group of individuals is just something else. we understand hospital protocols and the doctor-patient confidentiality so we aren't even asking for personal data on them, just lets know their statistics so we can collate it across the country and get them the needed help, is that too much to ask?

#EDAIAFRICA