Thursday, August 23, 2012
Global Genes Project
Abby's story was shared today on the Global Genes Project's blog. You can also see a feature on their Facebook page. This is exciting because it is one of the biggest proponents of rare disease awareness and research with a huge following. They are pretty respected in the medical community. They have a looooooong list of rare diseases, but guess what was not one of them? (It is now!!) My hope is that Abby's story aids doctors, geneticists, nurses, etc. in diagnosing CCMS in infants. Even more, I want her story to give hope to families who might be facing CCMS!