#aah? ,,congress #a/ ,session ,h4 ,r4 #bcfe ,,an ,,act ,to direct ! ,secret>y ( ,heal? & ,human ,s]vices to c>ry out a national project to prev5t1 diagnose1 treat1 & cure ,p>k9son's1 to be kn[n z ! ,national ,p>k9son's ,project1 & = o!r purposes4 #a4 ,%ort title ,?is ,act may be cit$ z ! ,dr4 ,emmanuel ,bilirakis & ,honorable ,j5nif] ,wexton ,national ,plan to ,end ,p>k9son's ,act4 #b4 ,national ,p>k9son's ,project ,title ,,iii ( ! ,public ,heal? ,s]vice ,act 7#db ,u4,s4,c4 #bda et seq47 is am5d$ by add+ at ! end3 ,w ,p>k9son's & ,relat$ ,disord]s #cii,,oo4 ,national ,p>k9son's ,project 7a7 ,def9ition ( ,p>k9son's ,9 ?is section1 ! t]m ,p>k9son's means-- 7#a7 ,p>k9son's disease2 & 7#b7 all o!r neurodeg5]ative ,p>k9sonisms1 includ+ multiple sy/em atrophy1 corticobasal deg5]ation1 progressive supranucle> palsy1 & ,p>k9son's-relat$ dem5tia4 7b7 ,e/abli%m5t ,! ,secret>y %all c>ry out a national project1 to be kn[n z ! ,national ,p>k9son's ,project 7ref]r$ to 9 ?is section z ! ,project71 to prev5t1 diagnose1 treat1 & cure ,p>k9son's4 7c7 ,activities c>ri$ out ?r\gh ,project ,9 c>ry+ out ! ,project1 ! ,secret>y %all-- 7#a7 create1 ma9ta91 & p]iodically update an integrat$ national plan to prev5t1 diagnose1 treat1 & cure ,p>k9son's1 ameliorate symptoms1 & sl[ or /op progression2 7#b7 c>ry out ! annual assessm5t "u subsection 7d72 7#c7 provide in=mation1 includ+-- 7,a7 an e/imate ( ! level ( curr5t ,f$]al inve/m5t 9 prev5t+1 diagnos+1 treat+1 & cur+ ,p>k9son's1 ameliorat+ symptoms1 & sl[+ or /opp+ progression2 & 7,b7 if applicable1 an e/imate ( ! inve/m5t necess>y to prev5t1 diagnose1 treat1 & cure ,p>k9son's1 ameliorate symptoms1 & sl[ or /op progression2 7#d7 coord9ate rese>* & s]vices across all ,f$]al ag5cies relat$ to ,p>k9son's2 7#e7 enc\rage ! developm5t ( safe & effective treatm5ts1 /rategies1 & o!r approa*es to prev5t1 diagnose1 treat1 & cure ,p>k9son's1 ameliorate symptoms1 & sl[ or /op progression2 7#f7 improve !-- 7,a7 e>ly diagnosis ( ,p>k9son's2 & 7,b7 coord9ation ( ! c>e & treatm5t ( individuals ) ,p>k9son's2 7#g7 review ! impact ( ,p>k9son's on ! physical1 m5tal1 & social heal? ( individuals liv+ ) ,p>k9son's & _! c>egiv]s & families2 7#h7 coord9ate ) int]national bodies1 to ! ext5t possible1 to integrate & in=m ! mission to prev5t1 diagnose1 treat1 & cure ,p>k9son's1 ameliorate symptoms1 & sl[ or /op progression globally2 & 7#i7 to ! ext5t practicable1 collaborate ) o!r entities to prev5t duplication ( exi/+ rese>* activities = relat$ disord]s4 7d7 ,annual assessm5t ,n lat] ?an #bd mon?s aft] ! date ( enactm5t ( ?is section1 & annually !reaft]1 ! ,secret>y %all c>ry out an assessm5t ( ! ,nation's progress 9 prep>+ =1 & respond+ to1 ! escalat+ burd5 ( ,p>k9son's1 includ+-- 7#a7 recomm5dations = priority actions bas$ on ! assessm5t2 7#b7 a description ( any /eps t are plann$ or h already be5 tak5 to implem5t su* recomm5dations1 includ+ :e!r su* recomm5dations c be implem5t$ "u exi/+ law2 & 7#c7 su* o!r items z ! ,secret>y det]m9es appropriate4 7e7 ,advisory ,c\ncil 7#a7 ,9 g5]al ,! ,secret>y %all e/abli% & ma9ta9 an ,advisory ,c\ncil on ,p>k9son's ,rese>*1 ,c>e1 & ,s]vices 7ref]r$ to 9 ?is section z ! ,advisory ,c\ncil7 to advise ! ,secret>y on ,p>k9son's-relat$ issues4 7#b7 ,memb]%ip 7,a7 ,f$]al memb]s ,! ,advisory ,c\ncil %all be compris$ ( exp]ts1 to be appo9t$ by ! ,secret>y1 :o collectively are f v>i\s backgr\nds & p]spectives1 includ+ at lea/ "o memb] f ea* (-- 7i7 ! ,c5t]s = ,disease ,control & ,prev5tion2 7ii7 ! ,adm9i/ration on ,community ,liv+2 7iii7 ! ,c5t]s = ,m$ic>e ,m$icaid ,s]vices2 7iv7 ! ,national ,in/itutes ( ,heal?2 7v7 ! ,ag5cy = ,heal?c>e ,rese>* & ,quality2 7vi7 ! ,dep>tm5t ( ,vet]ans ,affairs2 7vii7 ! ,food & ,drug ,adm9i/ration2 7viii7 ! ,national ,sci5ce ,f\ndation2 7ix7 ! ,dep>tm5t ( ,def5se2 7x7 ! ,environm5tal ,protection ,ag5cy2 7xi7 ! ,(fice ( ,m9ority ,heal?2 7xii7 ! ,indian ,heal? ,s]vice2 7xiii7 ! ,(fice ( ! ,surgeon ,g5]al ( ! ,public ,heal? ,s]vice2 & 7xiv7 o!r relevant ,f$]al dep>tm5ts & ag5cies z det]m9$ by ! ,secret>y4 7,b7 ,non-,f$]al memb]s ,9 addition to ! memb]s li/$ 9 subp>agraph 7,a71 ! ,advisory ,c\ncil %all include #aj exp]t memb]s1 to be appo9t$ by ! ,secret>y1 :o %all include repres5tatives ( m9ority communities1 communities disproportionately affect$ by ,p>k9son's1 & communities und]repres5t$ 9 ,p>k9son's rese>*1 :o %all ea* be f outside ! ,f$]al ,gov]nm5t1 & :o %all include-- 7i7 #b ,p>k9son's pati5t advocates1 at lea/ #a ( :om is liv+ ) "y-onset ,p>k9son's2 7ii7 #a ,p>k9son's family c>egiv]2 7iii7 #a heal? c>e provid]2 7iv7 #b biom$ical rese>*]s ) ,p>k9son's-relat$ exp]tise 9 basic1 translational1 cl9ical1 or drug developm5t sci5ce2 7v7 #a movem5t disord] speciali/ :o treats ,p>k9son's pati5ts2 7vi7 #a dem5tia speciali/ :o treats ,p>k9son's pati5ts2 & 7vii7 #b repres5tatives f nonpr(it organizations t h demon/rat$ exp]i5ce 9 ,p>k9son's-relat$ rese>* or ,p>k9son's-relat$ pati5t c>e & o!r s]vices4 7,c7 ,repres5tation ,! ,secret>y %all ensure t ! memb]s ( ! ,advisory ,c\ncil are collectively repres5tative ( ag5cies1 pr(essions1 individuals1 & entities conc]n$ )1 or affect$ by1 activities "u ?is section4 7#c7 ,meet+s 7,a7 ,frequ5cy ,! ,advisory ,c\ncil %all meet-- 7i7 at lea/ once ea* qu>t] dur+ ! #b-ye> p]iod beg9n+ on ! date on :i* ! ,advisory ,c\ncil is e/abli%$2 & 7ii7 at ! ,secret>y's discretion aft] su* p]iod4 7,b7 ,annual rese>* meet+ ,n lat] ?an #bd mon?s aft] ! date ( enactm5t ( ?is section1 & e ye> !reaft]1 ! ,advisory ,c\ncil %all conv5e a meet+ ( ,f$]al & non-,f$]al organizations to discuss ,p>k9son's rese>*4 7,c7 ,op5 meet+s ,! meet+s "u subp>agraphs 7,a7 & 7,b7 %all be op5 to ! public4 7#d7 ,annual report ,n lat] ?an #ah mon?s aft] ! date ( enactm5t ( ?is section1 & e ye> !reaft]1 ! ,advisory ,c\ncil %all provide to ! ,secret>y & ,congress a report conta9+-- 7,a7 a li/ ( all f$]ally-fund$ ef=ts 9 ,p>k9son's rese>*1 prev5tion1 diagnosis1 treatm5t1 cl9ical c>e1 & in/itutional-1 home-1 & community-bas$ programs & ! outcomes ( su* ef=ts2 7,b7 recomm5dations = priority actions to exp&1 elim9ate1 coord9ate1 refocus1 /reaml9e1 or cond5se ,f$]al programs bas$ on ea* program's p]=mance1 mission1 scope1 & purpose2 7,c7 recomm5dations to-- 7i7 r$uce ! f9ancial impact ( ,p>k9son's on families liv+ ) ,p>k9son's2 7ii7 improve heal? outcomes =1 & ! quality ( life (1 individuals liv+ ) ,p>k9son's2 7iii7 prev5t ,p>k9son's1 ameliorate symptoms1 & sl[ or /op progression2 7iv7 improve ! quality ( c>e provid$ to b5efici>ies ) ,p>k9son's :o receive cov]age ?r\gh a f$]ally-fund$ heal? c>e program1 su* z ! ,m$ic>e program "u title ,,xviii ( ! ,social ,security ,act or ! ,m$icaid program "u title ,,xix ( su* ,act2 7v7 rese>* ! association betwe5 environm5tal trigg]s & ,p>k9son's to help r$uce exposure to pot5tial trigg]s2 & 7vi7 rese>* & bett] und]/& ! und]ly+ factors contribut+ to ,p>k9son's2 7,d7 priority actions to improve all f$]ally-fund$ ef=ts 9 ,p>k9son's rese>*1 prev5tion1 diagnosis1 treatm5t1 cl9ical c>e1 & in/itutional-1 home-1 & community-bas$ programs2 7,e7 an evaluation ( ! implem5tation1 includ+ outcomes1 ( ! national plan "u subsection 7c77#a72 & 7,f7 implem5tation /eps to address ! recomm5dations & priority actions "u subp>agraphs 7,b71 7,c71 & 7,d71 bas$ 9 "p on ! evaluation "u subp>agraph 7,e74 7#e7 ,t]m9ation ,! ,advisory ,c\ncil %all t]m9ate at ! end ( cal5d> ye> #bjce4 7f7 ,in=mation %>+ ,ea* ,f$]al dep>tm5t & ag5cy t has in=mation relat+ to ,p>k9son's %all %>e su* in=mation ) ! ,secret>y consi/5t ) ! /atutory obligations ( su* dep>tm5t or ag5cy reg>d+ disclosure ( in=mation1 z necess>y to enable ! ,secret>y to complete a report "u subsection 7e77#d74 7g7 ,sunset ,! section %all cease to be effective at ! end ( cal5d> ye> #bjce4 4 ,pass$ ! ,h\se ( ,repres5tatives ,decemb] #ad1 #bjbc4;,cl]k4