World Rare Disease Day 2/29

http://www.facebook.com/#!/globalgenesproject Adult Congenital Heart Disorders as a combined whole are not all that rare but taken separately the ACHD's comprise a group of rare defects, syndromes and disorders. The Global Genes Project works to raise awareness of rare disorders and help families with un-diagnosed underlying issues get successful care. Less than 5% of all rare disorders have a treatment and while most ACHD's can be fixed or managed this does not take away from the fact that this community of people experience alot of turmoil, grief and upheaval while trying to get answers to what is causing their symptoms. Adults with Congenital heart defects or congenital syndromes which cause heart defects are a growing population that require specialize care and better treatments, better knowledge and further expertise by a population of doctors (cardiologists) that often have very little knowledge of congenital cardiac issues. Most 'general' adult cardiologists have little knowledge of the differences in these disorders versus cardiac disease in the general population who experience cardiac disease as they age. The Global Genes Project asks that all with any form of rare disease stand up, wear your 'genes' (jeans) with pride and spread the message that combined rare disease makes up a larger population than all forms of Cancers and AIDS combined - The rare disease community is 350 million strong. To receive ACHD-WI notifications please sign up as a 'follower' or for email notifications (or both) to the right of this post. If you have concerns about your care or about symptoms you may be experiencing please talk with your provider(s). Happy 'Genes' Day, Everyone! http://www.globalgenesproject.org/

Here we go!

On today's date, I am starting a blog for WI-ACHD!!!!  Let's just be honest, I don't know yet how to create a blog, but I will figure it out!!!