Mom recently diagnosed with Chronic Granuilomus Disease

My mom was diagnosed with Lupus at 25 years old and now at 48 years old has recently been diagnosed with Chronic Granuilomus Disease.  She was recently hospitalized twice, once for Norcardia and another time for Aspergillus (aspergillosis).  She is very overwhelmed and feels like this may be a death sentence.  I was wondering if there is anyone that can point me in the direction of more information and support groups.  Any information would be helpful...The doctors that are treating her case, have never treated someone with with Chronic Granuilomus Disease.  Please Help.