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EAAHNIKH LlHMOKPATIA A8~va ~I /<; It-D r:r npo~ TOU~ An: 2:.0,*-3 IQTPIKOU~LuM6you~ TIl~ Xwpa~ Kupio/e np6eope, La~ olal3ll3a~ouljetoijeapi81j.ttpwt.1/010/8.9.2017 EyypacpoTIl~ EMIlVIK~~ Opoorrovolcc LuM6ywv LTTavfwv Nocnpcnov na8~crewv (E.O.L. - LnANO.nA) Hellenic Federation of Associatinons for Rare Diseases (H.F.A-R.D.), (An nil: 2055/19.9.2017), IJE8ElJa:AvaKofvwcrll fopucrll~ TIl~ EMIlVIK~~ Ouoorrovoicc LuM6ywv-LTTavfwv Noonucnov na8~crewv (E.O.L. -LnANO.nA), avatttu~1l ouvepvcclcc, cruijijetox~ cre6pyava, OlJaOE~epvcclcc, rrpovocuucrc K.ATT.),IJETil TTapaKAlloll 6TTW~EVIlIJEPWOETE TO IJEAIlTTEPIOX~~EU8uvll~ TOULuM6you ccc. ITANEAAHNIO!: IAT PIKO!:!:Y AAoro!: CIT.I.!:.) llaoyt APXOY 3 & Y'PHAANTOY. 10675 A8HNA. THA.: 2107258660,2107258661,2107258662, FAX: 210 7258663 PANHELLENIC MEDICAL ASSOCIATION. 3, PLOUTARCHOU & IPSILANDOU Str., 10675 ATHENS. HELLAS www.pis.gr e e-mails:kentpiko:pisinfo@pis.gr.rpammateia:pis@pis.gr-tipqtokoaao:pisref@pis.gr AOrILTHPIO: pislog@pis.gr - ME8NEL: pisinter@pis.gr, pisinteri@pis.gr MHXANOrPA<l>HIH: pismember@pis.gr

EN\HNIKH OMOInON4IA IYN\OrnN InANInN NOIHMATnN na9hienn (E.O.I. - InA.NO.nA.) HELLENIC FEDERATION OF ASSOCIATIONS FOR RARE DISEASES (H.F.A. - R.D.) UTI' apt9j.l. 461/8-12-2016 6taTayT] TOUEtPTJv06tKdou A9TJvwv, ue mj~ovta apt9j.lo yypmpt]<; 841 0"'[0 rjt(lalooj.locrnov6lwvtouupwt06lk lou A9TJvWV A.<I>.M.:996985541/8-12-2016, Ll'LtO.Y.A0HN!lN nanemhnlor IATPIKO r"mofoi ru.z ~ APl0npOl... -. HMEP AH4JECL J~\..~. U>. H Ae~va, 8 IEmEI-l(3plou 2017 Ap.npwt: 1/010 npo<;:ynoupveln, tvonrourc, Nn~~, NnI~ xm Ematl1l-l0VlKE<;OpyavwoEl<; - CDopd<; (onw<; nlvaka ano6ektwv) 0El-la: «AvaKOlVWol1 l6puol1<; tl1<; EAAl1vlK~<;OI-lOanOv6la<; IuAAoywv - Inavlwv Nool1l-latwv nae~oewv (E.O.I. - InA.NO.nA.), avamu~11 cuvepvoclac, OUI-lI-lEtOX~OE opyava, Ol-la6E<;Epyaola<;, npoypal-ll-lata KAn.» To t.lolki']tlkoiui-l(3oualo trle; EAAIlVLK~e;Ouoonovolnc IUAAOYWV- Inavlwv Noonucnov na8~aewv (E.O.I. - InA.NO.nA.), EVIlIlEPWVEL YLa tnv lopuall t.wtepo(3a8illae; oovcvoonc - Ouocrtovolcc (IlE rnv cvortepco smovuulu), KOLVWVLKOU KaL auvolkaalollkouxapakt~pa, 11onotc EYKPl81lKEIlE rnv un'apl81l. 461/8-12-2016 OLaTaY~ lou ELPIlVOOLKElOUA81lvwv KaL KaTaxwp~81lKE IlE au~ovta apl81lo 841 OlO (3L(3AlO ouoonovouov TOU npwloolkeloua8llvwv. H E.O.I. - InA.NO.nA. EXELwe; LOpunKa IlEAIl louc;npwlo(3a8illoue; auaaoyoue;: A) naveaa~vla 'Evwall AIlQ>L(3AIlOlpoELOona8wv (n. E.A.) B} EAAIlVLK~Ermpla YLa tnv IVWOIl KuanK~ Nooo (E.E.I.K.) 'OnWe; OPl~ETaLOlO ap8po 1 tou KaTaOlanKOU, OUVaTOTIlTa Eyypa<t>~e;we; IlEAIl EXOUV npwto(3a8illee; Opvuvuioau; - IUAAOYOLcroutov ~ aa8evwv nou naaxouv cno InavLa Nooriuurc - na8~aele; Ka8wc; enlonc KaL IUAAOYOL YOVEWV KaL KIlOEIlOVWV rtou exnpooumouv croun (av~alka ~ EV~ALKa) rtou naaxouv uno InavLa Nooriuurc - na8~aele;. EllPA: BEpaV~ pou 14, 2 ~6pocpoc;,T.K. 104 32, Ae~va - 1:I1A.: 6972 550577

LUIlCPwva IlE rn oon avacpepovral 010 ap9po 2, Ol ~aolkol cxonol TI'}e;ouoonovdluc ElVaL: H avamu~i'}, I'} xtvnronolnon KaL I'} OUOITElPWOI'}TWVSuvuuscov TWVcrouev ~ TWVao9Evwv rtou rraoxouv uno Lrravla Nooriuura - na9~oele;, TWV YOVEWVKaL KI'}OEIlOVWVuurtov, Ka9we; KaL TWV OUMOYlKWV roue opvuvdiostov IlE OlOXOTI'}VEv9appuvol'} Yla OUYKPOTI'}OI'} loxupwvave~apti'}twvkal uvnrtpocumsuuxdiv npwlo~a9lllwv LWllaTElWv. 0 ouvlovloiloe; TI'}e; Opaol'}e; OAWV TWV IlEAWV TI'}e; E.O.I. - InA.NO.nA., IlE OlOXO TI'}V cvnueromcn KaL E~ciAElljJl'}TI'}e;ayvOlae;, TI'}e;rrapaMl'}pocpopl'}ol'}e; TWV rrpokammljjewv KaL TWV apvl'}nkwv OlaKploEwV nou ~lwvouv rc moue IlE Lrravla Noonuura- na9~oele; KaLOl OlKOYEVElEe;TOUe;. H rrpow91'}ol'}, I'} OlaOOOI'} KaL I'} EllrrEOWOI'} 010 MalOlo TI'}e; EAAI'}VlK~e;«oiviovlcc KaL noaltelae; KaL OlOUe; 9WIlOUe; aut~e; OXEllKWV 9EIlaTwv, WOlE va avayvwpl~eml on rc Lrravla Noorumru - na9~oele;, oi ~Aa~Ee; nou rrpokaaouv OlI'}V uvslu KaL KaT EITEKmOI'}V Ol xorcctccetc nou EmcpEpouv OlI'}V npoourmxri KaL KOlVWVlK~ ~W~ TWV atoilwv KaL TWV OlKOYEVElWVElVaL urr09eol'} npooruoluc KaLrrpoaywy~e; av9pwrrlvwv OlKaLWllaTWV. H opvrivuion OUOTl'}llanKWV EKOlpaTElWV EVI'}IlEpWOI'}e;TI'}e; EMI'}VlK~e; KOlVWVlae; KaL noaltelae;. H avaai'}ljji'} rrpwto~oualwv «n I'} ole~aywy~ opaoewv, KlVI'}TOrrOl~OEWV KaL amwv rrapeil~aoewv, rrpokelllevou va cvcvvcoptorst ro OlKalWlla OlI'}V M~PI'} OUIlIlElOX~ roue OlI'}V KOlVWVlK~~w~. H 9EOmOl'} uno TI'}VEMI'}VlK~ noaltela ouvrcvuanxcov KaLVOll09EnKWV OlaTa~EWV ~ amwv 9WIllKWV Kal OlOlKl'}nKWv PU91ll0EWV Yla 9EIlam nou roue acpopouv. H opvnviocn ouotnucruchv EKOlpaTElWV KaLopaOEWv EVI'}IlEpWOI'}e;KaL nal'}pocpopl'}oi'}e;ti'}e; EMI'}VlK~e; KOlVWVlae; KaL noaltelae; Yla TI'}V rrpoai'}ljjl'},bspnnelu KaL cnoxrrruorcon TWV LrravlWv NOOl'}llaTWV - na9~oewv. H OlEKOlKI'}OI'} KaL Ka9E ElOOUe; OlKaLWllaTWV TWV at0ilwv nou rraoxouv orto Lrravla Noonuarc - na9~oele; KaLTWVOlKOYEVElWVroue. H ouunupcoruon ore rrrouu rtou rraoxouv ono Lrravla Nooruicrc - na9~oele; KaL one OlKOYEVElEe;roue, {cpuolka npoouma) OE 9EIlam rrapa~laoi'}e; TWV av9pwmvwv KaL ouvrcvucnxcov OlKaLWllaTWV roue. H E.O.I. - InA.NO.nA. exnpooomsl TO KlVI'}Ila TWV atoilwv nou rraoxouv uno LrraVla Noorumrc - na9~oele;, TWV OlKOYEVElWV KaL TWV oumoywv roue OlI'}V E9vlK~ LUVOlloorrOVOla ATOIlWV IlE Avrmnpln {E.L.A.IlEA.}. H KalOXUpwol'} TOU POAOUTI'}e;E.O.I. - InA.NO.nA, we; KOlVWVlKOUEtnlpou TI'}e;EMI'}VlK~e; noaltelae;. H E.O.I. - InA.NO.nA OUIlIlElEXEl OE EMI'}VlKEe;, wpwrra'lkee; ~ OlE9VEle; opvcvcooe«; IlE ouvucric oxorrouc. H rrpow91'}ol'} KaL I'} Ev9appuvol'} ole~aywy~e; TI'}e;EmOlI'}1l0VlK~e; speuvcc KaL IlEAElWV OE oxenka IlE LrraVla Nooriucrn - na9~oele; 9Ellam. H rrpow91'}ol'} 9EIlaTWV nou OXEll~OVlal IlE TI'}V~lOAOYla KaL TI'}VYEVEllK~ EmOl~1l1'} KaL TI'}e; lolaltepl'}e; ouil~ome; autwv OTI'}Vspeuvu. H E.O.I. - InA.NO.nA, OUVOpallEl Yla TI'}V EKrrOVI'}OI'}KaL EcpapllOY~ cno TI'}V EMI'}VlK~ noaltela Illae; E9vlK~e; orpcrnvueic IlEOW E9vlKWV LXEOlWV~paol'}e;. BAEnE:cip8po 2. E6PA: BEpav~Epou 14, 2 ~6poq,oc;, T.K. 10432, A9riva - 't'i"ja.: 6972 550577

~to ap8po 3, ncpouoincovttn rc uson enlreufnc twv oxoruov tile; E.OL - ~na.no.na. ~to ap8po 4 tou «orccrcnxou, YlVEtaL avaq,opa one «rmvoolec twv IlEAWVKaL one OlaOlKaolEe;Evta~Ile;curdiv we;ileail tile; ouoonovolcc. ~UYKEKplIlEvata IlEAIl Sicxplvovrm OE:a) TaKtlKa, ~) ~uvepya, y) Apwya KaL0) Ertlnuu. a) ~UMOYOl- ~WllatEla crouiov nou naoxouv ana ~navla Nooriucru - na8~oele;, omoc cure Ka8E q,opa avaq,epovtal ornv Eupwna'(K~ ~aoll Kataypaq,~e; ~navlwv Nocnurrnov - na8~oewv «ORPHANET» KaL ElVaL cvcvvopiousvu vtn rnv EMaoa ana rnv E8vlK~ NOll08wla ouudxov«ile rnv nnpcvpudio 1 KaL2 tou ap8pou 24 tou N.4213/2013, omoc loxuelka8eq,opa. ~) ~UMOYOl- ~WllatEla YOVEWVKaLKIlOEIlOVWVnou exnpooconouv rrroun nou naoxouv ana ~navla Nocriucrc - na8~oele;, uno rnv svvoi«tile; nponvouuevnc napaypaq,ou. ~to EVMyw ap8po avaq,epovtal Ol MyOl csuvculcc Eyypaq,~e;IlEAWV,ta cnnrcouuevc ~~Ilata Yla rnv Eyypaq,~ VEOUIlEAOUe;,(nap.llI) Ka8we;KaLclAAEe;AEn:tOIlEpElEe;. (I3AEm: ap8po 4). AKOAOu8we;oro ap8po 5 OPl~OvtaLrc OlKaLWllata KaLOl unoxpewoele; twv ouamywv IlEAWV.(I3AEne:ap8po 5). ~to ap8po 6 vlvsrm avaq,opa yla roue nopouc tile; ouoonovotcc KaL IlEta~u claawv, Ka80pl~OVtaL11srnotu taktlk~ OUVOPOIl~nou ElVaL100 EUpWKaLto OlKalwlla Eyypaq,~e; OE50 EUpW. Ta KataOtatlKa opvcvn tile; ouoonovolcc, avaq,epovtaloro ap8po 7 KaLElVaL: a) H revlk~~uveaeuoll twv Avnnpootbmov twv IlEAWVtile; Ouocnovolcc, ~) To illolkiltlko ~UIl~OUAlOrnc, y) H EAEYKtlK~Emrportn, 0) H Eq,OpEUtlK~Ernrportri. ElOlKOtEpaoro ap8po 8 «revlk~ ~UVEAEUOll»otnv nap. 3 Ka80pl~OvtaL Ol olaolkaolee; EKAoy~e;cvnnpootomov twv oumoywv Yla tnv ouvepornon currie. ~ta ap8pa 9 KaL 10 pu8lll~ovtal 8EIlata Yla to illolki'lt'lko!ulll3oualo, nou e:lval e:ntalle:ae~ile:tple:t~ 8l'lte:la, Ka8we;KaLOl aplloolotlltee; twv IlEAWVrou. ~to ap8po 12 YlVEtaLuvcdiopn Yla rnv olaolkaola apxalpeolwvyla trw avaoel~1ltwv IlEAWVtOU illolklltlkou ~UIl~OUAlOUKaLtile; E.E.(I3AEne:ap8po 12). ~to ap8po 13 PU81ll~EtaL11oUYKPOtllOIltile; EmatIlIlOVlK~e;Emrponnc KaLto EPYOcurrie, EVWoro ap8po 16 Ka80pl~OvtaL8 llata OXEtlKaIlE nc smtponec KaLrc nopcrrurcrc tile; ouoonovclac, E~PA: B pav~e:pou14, 2 ' 6po<l>oc;,T.K. 104 32, Ae~va - lila.: 6972 550577

~E OUVEXElaOlEVEPYElae;apXaLpEmWV cno La lopullko:ileail- ~um6youe; Yla rnv EKAOY~ cvnrtpootomov IlEAWVTile; revlk~e;~uveaeuoile;tile; E.O.L-~nA.NO.nA., OUYKA~8IlKE11 111 revlk~ ouvsxeuon (npoxnxo ap. 1(2017)/28/6/2017) Yla TOVKa80ploll6 TOUtololKllllKOU ~UIl~OUAlOUKaLaKOAOu81l0E 11111 ~uveoplaoll TOUtololKllllKOU ~UIl~OUAlOU[npcxnxo ap. 1(2017)/28/6/2017) IlE TIlV onolo OUYKPOT~8IlKEaUT6 OE otouu, TO OrrOLOEXEl81lTEia 3 ETIl, EWe;TOV10UVLOTOU2020. ~TOrrAaLmo aut6 KaLnpoxsuievou va EVIlllEpw80uv Ol apll66lee; unnpeolec KaLOl q,opeie; Yla tnv E.O.~.-~nA.NO.nA., arroo1emovlal ouv/va La ak6aou8a nnpcorunxc: A) Avtlvpudio KaLa01allKOU Tile;E.O.~.-~nA.NO.nA. B) AvrlvpudioTile; urr'apl81l. 461/8/12/2016 6laLay~e; TOU ElPIlVOOlKElOUA81lvwv nou KaLaxwp~81lKE IlE au~ovta apl81l6 841 010 ~l~alo ouoonovoubv TOU npwtoolkelou A8llvwv. n AvrlvpodioTOU rrpakllkou Ap.l (2017) /28-6-201 nepl ouvxpornonc TOU tololkllllkou ~UIl~OUALouOEoWlla. IE OUVEXEla 'twv avw'tepw, 'to tololkllnko IUIlJ3ouAlo, aneu8uve'tal IlE 'to nnpov Eyypacpo npoc OAEe;ne; apiloolee; unnpeotec reiv YnoupyEiwv, ttov Nntoto Kal Nnlto nou 'to avrucslusvo Kal 'to EPYO roue OXE'ti~E'tal IlE 8Ella'ta rtev Inaviwv NOOIlIlO:'tWVna8~OEwv, OE EmO'tllllovlKa Kal EpEuvllnKa lvenrouro, OpyavwOEle; Kal Cl>opEie;, npokelllevou va AaJ30uv YVWOIl'tOU OXEnKOUKa'taO'tanKOU Kal va EVIlllEpw80uv Yla rnv iopuoil 'tile; E.O.I. - InA.NO.nA. I'to naaiolo 'tile; apxlk~e; EVIlIlEPWolle; Kal yvwpliliae; IlE rnv E.O.I. - InA.NO.nA., OEOOIlEVOUon au't~ ano'teaei 'to anoaaelo'tlko toeu'tep0j3a8ill0 IuMoYlKO 'Opyavo EKCPpaolle; ttov IuMoywv - OpyavwoEwv rtov Inaviwv Noolllla'twv na8~oewv Kal npokelllevou va Eopalw8Ei Ilia olapk~, ouolao'tlk~ Kal ano'teaeollank~ ouvepyaoia OE Ka8E EninEoo, napakaa.eio8e onwe;: A} Na EVllllEpw80uv OXE'tlKa CtMEe;unnpeolec rou cpopea oae;, Ka8we; Kal rc aplloola O'tEAEXIlIlE yvwo'tonoilloll rou nupovroc Eyypacpou. B} Na EV'tax8Ei 11 E.O.I. - InA.NO.nA. orouc anooek'tee;, EYKUAAiwv, Eyypacpwv, EK8EOEWV,avacpopwv, OXEoiwv VOIlOU ~ unoupylkwv anocpaoewv, npokelllevou va AallJ3avEl yvwoll Kal va Ka'ta8E'tEl 'tle; anoljjele; 'tile;. r} Na npooolopl080uv unllpeoiee; Kal O'tEAEXIlaplloOla Yla EmKolvwvia IlE rnv E.O.I. - InA.NO.nA Yla ElOlKo'tEpa 8Ella'ta. d} Na EV'tax80uv Kal va ouilile'taoxouv EKnpoownOl 'tile; E.O.I. - InA.NO.nA OE ElolKa Ka'ta neplrrnoon IuMoYlKa 'Opyava, onwe; emrponec, ollaoee; Epyaoiae;, naa'tcpopilee; olaaoyou- olaj3ouaeuolle;, oik'tua maonkwv Ecpaplloywv Kal ouvepyaoiae;, npoypalllla'ta, npw'toj3ouaiee; AAn. npoxeiusvou va Ka'ta'ti8EV'tal Eniollila Ol anoljjele; rou CPOpEa, 0't0 naaiolo olaaoyou IlE cpopeie; 'tile; KOlvwviae; nov noal'twv. E~PA: BEpav~Epou 14, 2 ~6po<j>oc;,T.K. 104 32, Ae~va - 'tila.: 6972 550577

E) Na EKcS'1Aw9Ei TO EvcSla<l>Epov ana Enlat~1l0VEC; TWV unnpeouev Kal <l>0pewv, npokelllevouva OUllllETaoxouv at'1v Enlat'11l0VlK~ EnLTpon~ T'1C;E.O.I. - InA.NO.nA, ouvcspallovtac; IlE TO Enlat'11l0VlKa TOUC;EPYO Kal T'1VE~ElpLa ornv UnOat~pl~'1 TOU cl>opea. IT) Na OXEcSlao9Ei '1 EVEPY~OUIlIlETOX~T'1C;E.O.I. - InA.NO.nA OEcSla<l>opa ~le9v~ Kal Eupwna'iKa npoypallllata Kal ~paoelc; nou avamuooovtal ana TOV<l>0pEa. Z) Na csleukoauv9ei '1 cslaxeiplo'1 Kal '1 EnLAuo'1 EnlIlEPOUC; npo(3a'1llatwv nou avakumouv OE 9EIlaTa InaVLWV Noo'1llaTWV na9~oewv, npokelllevou va unoat'1plx90uv Ol ao9eveic;, Ol OlKOYEVELEC; Kal Ol OUMOYOl. rla 1:I1VEVI1IlEPWOI11:WV e» Myw OPEWV, rc USpUl:lKa IlEAI1 1:11e;E.O.L - ma.no.na., EXOUV cvcprnost Ol:OUe; lol:01:0ltoue; TOUe; TO na~pee;.xcrcorcnxo 1:11e;0IlOOltOVOlae; (www.retina.gr r www.cysticfibrosis.gr). Kcrromv 1:WVaVW1:EpW, 1:0 6l0lKI1l:lKO ~UIl~OUALO, EK pa~el 1:I1V8El:lK~ 1:0U 01:a0I1 Ol:I1V Evap~11 1:WV spvcouov KaL 1:WV evepveuov nou cnorrouvrm Yla 1:I1V EOpalWOI1 1:11e; ouvepvcolcc 1:WV apllo6lwv UltI1PWU.llV KaL OPEWV IlE 1:I1V E.O.~.- ~na.no.na. KaL EUEA1tlOl:El YLa 1:I1V 8El:lK~ avl:altokploi1 TOUe; os Ka8e. enlnsdo oovepvcolcc, ltpoo~aeltovme; Ol:I1Valto KOLVOUoUIl~oM YLa 1:I1VOlaXElpLOI1 E1tlIlEpOUe; 8Ella1:WV. Ta IlEAI1 TOU 6L ElVaL Ol:I1VoLa8wI1 occ YLa Ka8E axel:lk~ nal1po Opla KaL EVI1IlEPWOI1. Iuv/va: A,B,r ME EK"rlIlIlCHl rla to L'lLolKlltlKOIUIl~OUAlO o np6e:opoc; H rev.rpuilil<l"c UC; Inivou 'Awa EL'lPA:BEpUV~EPOU14, 2 ~opo4>o~,t.k. 104 32, Ae~vu -'(1'];\.: 6972 550577

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