Tuesday, July 22, 2014
What happens when your child has a condition so unusual that the medical community doesn't even know what it is? What happens when genetic sequencing reveals an answer, but the medical community tells you there's no hope for further research or treatments because no one else in the world has this condition? What happens when parents don't accept that answer? READ THIS ARTICLE. All I can say is WOW!
Monday, July 7, 2014
I was super excited to find this one-stop-shop resource for all things MCADD on the new Reg4All website created by Genetic Alliance. The disease info search has a wealth of information on all the latest scientific literature and clinical trials underway for hundreds of genetic conditions. And Reg4All is a groundbreaking new way to share medical information (however much you are comfortable sharing) in a community of researchers for the benefit of everyone with that same condition. Check it out!