We have for 25 years supported this foundation who help people who just got the diagnose and dont have anywhere to go but the web where you get to much non relevant info. All members of the foundations is given its own contact person. Our CEO & Chairman has this disease along with both his parents, sister thats why we have supported them. And our Chairman is now terminal ill so he need special medications for that disease which is so expensive and not covered since the disease is to rare 1 of 100 mill can get it by a surgery gone very bad.