August, 20 1999

My sister has just been diagnosed with neuroacanthocytosis.  Needless to say it has been  devasting to our entire family.  Dr Lynch,  at the University of Pennsylvania Hospital explained to me that this disease is extremely rare.  I need to get as much information on the disease as possible in order to better understand what is happeneing to my sister.  I would
greatly appreciate it if you could emial me any information you have on the disease.  I would also like to , if possible get in contact with other families dealing with this disease.   I greatly appreciate your time.
 
APPARENT PATIENT LOCATION - USA