group of ptients from round the world nd their loved ones hve joined together to crete the ECD Globl llince. Our mission is to: · Provide support to ECD ptients nd their loved ones · Rise wreness of ECD · Promote nd fund reserch imed t finding more effective nd rtionl tretments for ECD, with cure being the ultimte gol · Shre eductionl mteril regrding ECD We re NOT medicl professionls. We cnnot dignose ptients. We do not offer medicl dvice. We do not promote ny prticulr tretment options. Rther, we re there for ech other nd try to gther informtion from the medicl professionls so we cn mke it esily vilble. It is the responsibility of the ptient, loved ones nd medicl tem to evlute the use of this informtion when developing progrm of cre. Our members del with the everydy relities of coping with rre, incurble disese (some hve done this for decdes). Until now, much of wht hs been lerned, on the ptient coping level, hs been cquired through personl experience, one fmily t time, one hert che t time. This group seeks to ese some of the hrdships by helping newcomers to move from “pnic” to “possibilities of cre”. s non-medicl people, ptients with ny rre disese (nd their loved ones) fce the chllenge of cquiring timely, relible informtion. Prticipnts of this ECD Globl llince shre wht their doctors re doing TODY. If tretment or procedure shows promise you cn help fst trck tht informtion to your doctor. By educting ourselves we shorten the lerning curve for ptients nd doctors nd so reduce the burden of ECD for ll. It is our plesure to shre with you wht we’ve lerned. We re ordinry people deling with n extrordinry disese. The 2013 End of Yer Report provides more informtion bout the ccomplishments nd gols for the orgniztion. For more informtion see the “ECD Globl llince” pge
