Below is a link to a site from a neurology magazine dealing with rare and orphan diseases. This may be of great help to many of you and will also prove very interesting to read. This was forwarded from a member of my Myositis team. Would,love to start a conversation with all of you.

http://journals.lww.com/neurologynow/Fulltext/2012/08020/Too_Rare_for_Research__People_with_rare_diseases.18.aspx