,,iii #aai? ,,congress #a/ ,session ,s4 ,,res4 #ajd ,,9 ,,! ,,s5ate ,,( ,,! ,,unit$ ,,/ates ,febru>y #bg1 #bjbe,mr4 ,b>rasso 7= himself1 ,mr4 ,blum5?al1 ,ms4 ,klobu*>1 ,mr4 ,m>%all1 ,mr4 ,scott ( ,s\? ,c>ol9a1 ,mr4 ,wick]1 & ,mr4 ,book]7 submitt$ ! foll[+ resolution2 :i* 0 consid]$ & agre$ to ,,resolution ,designat+ ,febru>y #bg1 #bjbe1 z ,r>e ,disease ,day4 ,:]eas a r>e disease or disord] is a disease or disord] t affects a small numb] ( pati5ts2 ,:]eas1 9 ! ,unit$ ,/ates1 a r>e disease or disord] is def9$ z affect+ few] ?an #bjj1jjj individuals2 ,:]eas1 z ( ! date ( adoption ( ?is resolution1 m ?an #cj1jjj1jjj individuals 9 ! ,unit$ ,/ates are liv+ ) at lea/ #a ( ! m ?an #aj1jjj kn[n r>e diseases or disord]s2 ,:]eas *ildr5 ) r>e diseases or disord]s acc\nt = a significant portion ( ! population affect$ by r>e diseases or disord]s 9 ! ,unit$ ,/ates2 ,:]eas _m r>e diseases & disord]s are s]i\s & life-?reat5+2 ,:]eas #bjbe m>ks ! #dbnd anniv]s>y ( ! enactm5t ( ! ,orphan ,drug ,act 7,public ,law #ig-dad2 #if ,/at4 #bjdi71 a l&m>k law enabl+ trem5d\s advances 9 ! rese>* & treatm5t ( r>e diseases & disord]s2 ,:]eas programs su* z ! ,accel]at+ ,r>e disease ,cures ,program ( ! ,food & ,drug ,adm9i/ration 7ref]r$ to 9 ?is preamble z ! ,,fda7 aim to drive sci5tific & regulatory innovation & engagem5t to accel]ate ! availability ( treatm5ts = pati5ts ) r>e diseases2 ,:]eas #bf ( ! #ej novel drugs approv$ by ! ,c5t] = ,drug ,evaluation & ,rese>* ( ! ,,fda 9 #bjbd-- 7#a7 7 approv$ to prev5t1 diagnose1 or treat a r>e disease or condition2 & 7#b7 receiv$ an orphan-drug designation2 ,:]eas1 al?\gh ! ,,fda has approv$ m ?an #hhb drugs & biological products ) #a1cjj orphan indications z ( ! date ( adoption ( ?is resolution1 approximately #ie p]c5t ( r>e diseases /ill d n h a treatm5t approv$ by ! ,,fda = _! condition2 ,:]eas f9anc+ life-alt]+ & lifesav+ treatm5ts c be *all5g+ = individuals ) a r>e disease or disord] & _! families2 ,:]eas individuals ) r>e diseases or disord]s c exp]i5ce difficulty 9 obta9+ accurate diagnoses & f9d+ physicians or treatm5t c5t]s ) exp]tise 9 _! r>e disease or disord]2 ,:]eas ! ,national ,in/itutes ( ,heal? support innovative rese>* on ! treatm5t ( r>e diseases & disord]s2 ,:]eas ,r>e ,disease ,day is obs]v$ ea* ye> on ! la/ day ( ,febru>y2 & ,:]eas ,r>e ,disease ,day is a global ev5t t 0 fir/ obs]v$ 9 ! ,unit$ ,/ates on ,febru>y #bh1 #bjji3 ,n[1 !re=e1 be x ,t ! ,s5ate-- 7#a7 designates ,febru>y #bg1 #bjbe1 z ,r>e ,disease ,day2 & 7#b7 recognizes ! importance (1 ) respect to r>e diseases & disord]s-- 7,a7 improv+ aw>5ess2 7,b7 enc\rag+ accurate & e>ly diagnosis2 & 7,c7 support+ national & global rese>* ef=ts to develop effective treatm5ts1 diagno/ics1 & cures4