pooll dii. velstoon muscular dystrophy community sahayam, 2013 leeii gaveshanam, vidyaabhyaasa bhedagathikal

pooll dii. naashanal instittyoott oof healthinte (nih) muscular dystrophy gaveshana paripadi parishkarikkunnathinayi pothujanaarogya sevana niyamam bhedagathi cheiyunna oru yunaittad stetts pothu niyamamaan velstoon muscular dystrophy community asisttans, research aandu ejyukkeshan amendments oof 2013 (;).
113-aamath yunaittad stetts kongrasil yunaittad stetts house oof representativesilaanu bill avatharippichathu.
pashchaathalam.
2001 leeii muscular dystrophy community asisttans research aandu ejyukkeshan bhedagathikal ("emm. dii. cair act",) duchen, becker, limb girdil, konjenittal, faisiocapulohumeral, myotonic, okkulofarinchiyal, distal, emery-drifus muscular dystrophical ennivayulppede vividha tharatthilulla muscular dystrophyumaayi bandhappett gaveshanam nadathunnathinaayi pothujanaarogya sevana niyamathil bhedagathi varuthi.
muscular dystrophy association parayunnathanusarichu, "2001 muthal muscular dystrophic 67 klinikkal pareekshanangalo chikilsakalo nadannittundu, nilavil 37 klinikkal pareekshanangal nadakkunnu."
billile vyavasthakal.
"eee sangraham pradhaanamaayum oru pothu domaine srothassaaya kongras research sarvees nalkunna sangrahathe adisthaanamaakkiyullathaanu."
pooll dii. dii velstoon muscular dystrophy community asisttans, research, ejyukkeshan bhedagathikal enniva naashanal instittyoott oof healthinte (nih) muscular dystrophy research prograam parishkarikkunnathinayi pothujanaarogya sevana niyamathil bhedagathi varuthum.
eee padhathikku keezhil ulppeduthiyittulla muscular dystrophy vividha roopangal bill vipuleekarikkum. pooll dii vazhi nadatthiya gaveshanam aavasyamaanu. velstoon muscular dystrophy sahakarana gaveshana kendrangalil hridaya, shwaasakosha pravartthana gaveshanam ulppeduthunnu. atharam kendrangalkkidayil daatta pankidunnathu urappakkaan nihile director aavashyappedunnu.
saamoohika suraksha bharanakoodavum saamoohika jeevithathinaayulla yunaittad stetts bharanakoodavum ulppeduthunnathinaayi muscular dystrophy coordinating kammittiyude (emdisi) ghadana bill parishkarikkum.
billinu varshathil kuranjathu rund thavanayenkilum emm. dii. sii. sii yogam cheranam. emm. dii. sii. sii. yude karmapadhathi thaazhepparayunna kaaryangalkk vyavastha cheyyendathundu (1) vividha tharatthilulla muscular dystrophy ulla rogikalkku swathanthramaaya jeevita vibhavangalum pinthunayum nalkunnathinte chelavu-falaprapti prakadippikkunnathinula aarogya saambathika padanangal, (2) vividha tharatthilulla muscular dystrophy ulla muthirnnavarkk opttimal klinikkal cair edapedalukal nirnnayikkunnathinulla padanangal, (3) vividha tharatthilulla muscular dystrophy ulla muthirnnavarude aarogyam mechappeduthunnathinulla klinikkal edapedalukalude vikasanam.
vividha tharatthilulla muscular dystrophyiludaneelam marakamaaya rogangalude purogathi kuraykkaan saadhyathayulla uyarnnuvarunna chikilsakaludeyum vyakthigatha marunnukaludeyum moolyanirnnayavum amgeekaaravum vegathilaakkaan emm. dii. sii. sii oru padhathi vikasippikkendathundu.
duchenneyum mattu tharatthilulla muscular dystrophykaleyum sambandhicha epidemiological pravartthanangal nadathunnathil yunaittad stetts sekrattari oof health aandu human sarveesas (echhs) vividha vamseeya, vamseeya janasamkhyayil ninnulla daatta pidichedukkunnuvennu urappakkukayum muscular dystrophyecurich pothu allengil swakaarya gaveshanam nadathunna anweshakarkku parasyamaayi labhyamakkukayum cheyyanamennu bill aavashyappedunnu. nireekshana paripadiyum gaveshana kendrangalum thammil thudarunna edapedalukalum sahakaranavum valarthiyedukkaan secretory nirddeshikkunnu.
nirddeshikkunnu muscular dystrophy community sahayam, gaveshanam, vidyaabhyaasa bhedagathikal enniva bhedagathi cheyth secretory inipparayunna kaaryangalkk adhikaarappeduthum (1) pediatric rogikalkkaayi vyaapakamaayi nilavilulla duchen-becker muscular dystrophy paricharana parigananakal update cheyyukayum pracharippikkukayum cheyyuka, (2) muthirnna rogikalkkaayi duchen-becker muscular dystrophy parigananakalum ellah muscular dystrophy janasamkhyaykkum theevra paricharana parigananakalum vikasippikkukayum pracharippikkukayum cheyyuka. atharam paricharana parigananakal muscular dystrophy nirddishta roopangalkkaayi nilavil nadannukondirikkunna nilavilulla shramangale adisthaanamaakkiyullathaanum muscular dystrophy rogikalude nyoonapaksha, cheruppakkaar, muthirnnavar ennivarude deseeya parivartthana sarveyude kandethalukalodu prathyekamaayi prathikarikkunna thanthrangal ulppeduthanamennum nirddeshikkunnu.
kongras bajatt oafees report.
"eee sangraham pradhaanamaayum kongras bajatt oafees nalkia sangrahathe adisthaanamaakkiyullathaanu, 2014 juulai 15 nuu oorjja, vaanijya samiti report cheytha prakaram. ithu oru pothu domaine srothassaanu."
echu.aarr. muscular dystrophyumaayi bandhapetta nireekshanam, gaveshanam, vidyaabhyaasa pravartthanangal ennivaykku veendum amgeekaaram nalkunnathinaayi 594 pothujanaarogya sevana niyamam bhedagathi cheyyum. muscular dystrophy adhika roopangal ulppeduthunnathinaayi naashanal instittyoott oof health (enn. aii. echu), centers phoor disease kantrol aandu prevention (sii. dii. sii) ennivayude vakuppukal bill vipuleekarikkum. janasamkhyayiludaneelam muscular distrophiyekkurichulla kooduthal praathinidhya daatta pidichedukkaan ithu cdcyode nirddeshikkum.
kongras bajatt oafees (sii. bii. oo) echu nadappakkunnathaayi kanakkakkunnu.aarr. kanakkakkunnu.aarr aavashyamaaya thuka viniyogikkumennu karuthiyal, eee kaalayalavil 323 dasalaksham dollar chelavu varum. nerittulla chelavukaleyo varumaanatheyo baadhikkaathathinaal ningal pookumbool panamadaykkunnathinulla nadapadikramangal eee niyamanirmmaanathinu baadhakamalla.
echu.aarr. 594ll dhanasahaayamillaatha maandett parishkarana niyamathil nirvachichirikkunnathupo anthar gavanmental, swakaarya mekhalaa maandettukalonnumilla.
nadapadikramangalude charithram.
pooll dii. 2013 leeii velstoon muscular dystrophy community sahayam, gaveshanam, vidyaabhyaasa bhedagathikal enniva 2013 februvari 8 nuu yunaittad stetts house oof representativesilekku prathinidhi avatharippichu. maikkal sii. burgus (aarr, tx-26). yunaittad stetts house kammitti oonn energy aandu komezhsinum yunaittad stetts house energy sabkamitti oonn healthin bill ayachu. 2014 juulai juulai house report <aii. dii. 1>-noppam bill report cheyyappettu (bhedagathi cheythu). 2014 juulai juulai sabha shabdavottode bill pasaki. 2014 septambar septambar yunaittad stetts senatt ekakandamaaya sammathathode bill passacan vottu cheythu. 2014 septambar septambar president barak obaama billil oppuvachu niyamamaayi.
charchayum charchayum.
maathrpadhathiyaaya muscular dystrophy billine pinthunakkukayum bill passacan sahaayikkunnathin nadapadiyedukkaan pinthunakkaarodu abhyarthikkukayum cheythu. samghadanayude abhipraayathil, "duchen mattu tharatthilulla muscular dystrophy baadhichavarude ayuss vardhippikkunnathinum mechappeduthunnathinum phalapradamaaya chikilsakalilekkum chikilsakalilekkum namme aduppikkunnuvennu njangal vishwasikkunna gaveshanathile munnettangalkku uthejanam nalkunnathinum kazhinja 13 varshamaayi valareyadhikam cheytha naazhikakkallaya emdi-cair act niyamam bill update cheyyum."
muscular dystrophy association billine pinthunachu, aadyathe niyamam nadappaakkiyathinusheshamulla nettangal pattikapedutthi, ennaal "iniyum valareyadhikam pravartthanangal nadathendathundu, koodaathe gaveshakarkk oru prathividhi kandethunnathilekku purogathi kaivarikkaan kazhiyumennu urappakkaan vardhicha federal pinthuna aavasyamaanennu vaadikkunnu."

