He aha e oe i kapa aku ai i ka loa pipiʻi lapaau i loko o ke ao nei?

Loaʻa ai o kekahi mea lāʻau lapaʻau poʻe olokaa iho ma luna o ka ieeeea?. O ke kumu ho i ka mea i ka mea, e hoopakele pipiʻi ai ', hua mai la i ka poe liilii, batches. IeAUPIIe, IAa IO keia ka lapaʻauʻia, loaʻa i ka pohihihi keia pathologies. Kekahi poe akamai i manaoio i ka waiwai e lilo aku o kekahi mau lapaau muli o kona kiʻekiʻe no i ka mea i ka mea, aohe Competition. A papa inoa o ia huahana Ua loa ai nui, i waena o lākou i ka loa pipiʻi i loko o ke ao o ka lapaau, e loaʻa hou ma mua o ka miliona Euro.

Ka lāʻau Aldurazyme

Kēia lāʻau ua papahana e hana Hurler maʻi pale, i hoike mai ai ia ia iho i loko o kamaliʻi. Ua poino mai ka maʻi i ka apana uuku na oi aku mamua o eono haneri kanaka nā hualoaʻa a. Maʻi inhibits physical a me ka pono? Acaeoey ana o na keiki i opio me eha makahiki makahiki.

Ke kāki o keia hale i ka holaʻelua haneri tausani dala.

Uluwehi O "Cerezyme"

Ma ka lilo ana o keia k, e loaʻa e pili ana i ka mea hookahi dala me ka Aldurazyme. "Cerezyme" - o ka ia me ka loa pipiʻi lapaau i loko o ke ao nei. Ua Ua hoakaka ia no ka Gaucher maʻi. No ka mea maʻi wehewehe aku ma ka hoʻomāhuahua o momoma hoʻokomo kālā i loko o ka maʻiʻaʻai, ake, lolo a me ka iwi ka lolo. Kēiaʻano o ka mae obesity huikau hana o ka ia maʻiʻaʻai a me nā puʻupaʻa. Ka lapaʻauʻia replaces ka'ūhū i mea ma Gaucher maʻi o pau kahi e.

A puni ke ao nei, kanaka me keia maʻi pale ma kahi o eono tausani kanaka.

Ka lāʻau Myozyme

Aia e pili ana i na haneri o ka ai ', i loaʻa oi ma mua o ka tausani Euro no hue. mau ai 'a pau e pili ana i ka waeʻano o "loa pipiʻi lapaau i loko o ke ao nei." He aha mea i ka inoa o kekahi lāʻau i loko o kēia hui? Kēia ka lapaʻauʻia Myozyme, no ka iapaau ana o Pompe maʻi pale. A pathology wehewehe aku ma ka deficiency o Alpha-glucosidase. Ua hiki aku i ka luku ana o nāʻiʻo a me kaʻoi ulu i loko o ka buke o ka naau, hoʻomōhala naehana pathology. Loa pinepine, i ka maʻi ua 'akomi i loko o kamaliʻi.

I ka hoʻohana 'ana i ka lāʻau' hiki ana i ka keʻano o ka hanaʻana, a kōkua keiki hoʻomaka e hanu kū kaʻawale. Ke kumu o ka iapaau ana konohiki, e loaʻa hoʻokahi haneri tausani Euro no ke keiki. Inā ka maʻi ua diagnosed ma ka adulthood, laila iapaau ana, e lawe hou aku, ekolu haneri tausani.

o ia hoʻi, Fabrazyme

Kekahi loa pipiʻi lapaau i loko o ke ao nei - ia mea he mea o Fabrazyme. Ke kāki o ka lāʻau lapaʻau, e loaʻa ma kahi o ekolu haneri tausani dala.

Ka lāʻau 'hoʻomohala no ka iapaau ana o Fabry maʻi. It ke kumu o ka umu ahi e ka waiʻona ma, ka ho'ākea naau, hakuʻala pilikia. A puni ke ao nei, kanaka e loaa ana mai o keia maʻi, aole oi aku mamua o ekolu tausani kanaka.

Ka lāʻau Arcalyst

Kekahi manaoio i ka loa pipiʻi i loko o ke ao nei o ka lapaau - He lāʻau ka hoʻohua Regeneron i kapaia o Arcalyst, no ka iapaau ana o ka maʻi pale Muckle-Wales. Pathology ua recurring intermittent wela, huiʻeha, hakuʻala. Maʻi e loli ai ma kahi o elua miliona kanaka nā hualoaʻa a.

Ke kumu o ka lāʻau ma kahi o ka elua haneri a me ka iwakālua tausani dala.

Ka lāʻau Soliris

Kekahi manawa aku nei, i ka loa pipiʻi lapaau i loko o ke ao nei - Soliris. Ke kumukuai o ka lāʻau o ma kahi o ka hapalua o ka miliona dala. O ia hoʻi, hana maikaʻi i kāna hana i loko o i ka'ōnaehana paleʻea'ōnaehana pepehi ula koko keena. Ua lapaau Ua lawe elima paha o lakou tausani kanaka.

Na laau a me Elaprase Naglazyme

Kekahi lāʻau, mai ka mahele ana i ka loa pipiʻi lapaau i loko o ke ao nei - mea he lāʻau Elaprase. Kona kāki mea,ʻehā haneri tausani dala. Loa i hōʻike mai no ka Hunter maʻi pale. No ka pathologies wehewehe aku ma ka hua o ka 'ōlelo, lolo poino a me Kaulu ihu. A puni ke ao nei, ma kahi o elua tausani kanaka i kēia k ai.

Kahi o ka mea ia kāki Naglazyme. Ua Ua kuhikuhi e hana Maroto-Lamy. Maʻi pale e loli ai oi ma mua o ka tausani kanaka a puni ka honua. No ka mea maʻi wehewehe aku ma ka mānoanoa o ia mea lehelehe, pōkole kino a me ka nui poo. Ua, mai ka makahiki o ka umikumamalima e hoomanawanui i hoʻopaʻaʻia i ka noho huila.

Cinryze

Kēia lāʻau '- ka loa pipiʻi lapaau i loko o ke ao nei, a ua waiwai oi aku mamua o ekolu haneri tausani dala. Ka lāʻau 'ua papahana e hana hereditary angioedema type. Ma keia maʻi hoike akuʻole'ōnaehana paleʻea'ōnaehana, kumu hanahana loa nani o na lehelehe, i ka abdominal lua.

Ka loa pipiʻi lapaau

No laila, i ka i ka loa pipiʻi lapaau i loko o ke ao nei? Pehea ka nui o aʻole ia loaʻa? Elua haole hui i ulu ka loa pipiʻi lapaau i loko o ke ao nei. Glybera ka mea, ua kapaʻia. Ke kāki o ka lapaʻau keia hale, e e oi ma mua o ka miliona Euro.

New'ōewe lapaau ua manaoia e hana i kekahi ke nānā aaiaoe maʻi - lipoprotein lipase deficiency. Ke'ūhū regulates i ka pae ana o lipids i loko o ke kino. Manawa'ōewe mutation'ūhū ua i hua mai ma ke kino, no ka mea, i ke kiʻekiʻe kamepiula vascular occlusion.

Kekahi hue o ka lāʻau, e loaʻa hou aku he kanalima tausani Euro, a me ka piha papa o ka hana maikaʻiʻole o ka maʻi, e e oi ma mua o ka miliona. Prospective nā mea maʻi i kēia maʻi pale, ma laila nō ma kahi o elua haneri kanaka i loko o 'Eulopa, no laila, i ka mea kökua ka mea olelo lealea, e i kekahi hopena ma luna o ka Bedroom o ka lehulehu ola kulanui.

I loko nō o ka uku kiʻekiʻe, ka mea kökua ka mea hiki ke loa hoola i ka pathology. E like me ka mea haku polokalamu, ka papa o ka iapaau ana me ka ho'ēmi mau'ūhū hope Inc.

Ka lāʻau 'Glybera'ōewe o ka ha o ka hale i loko o ke ao nei. Ka mua elua i? Ac? E Amelikaʻepekema, a hua mai la ia ma Kina. He mau hana i papahana no ka iapaau ana o ka maʻi 'aʻai, oia hoi, cervical Ka maʻi' aʻai, a hikoko o ke poo. Ekolu ano ma Rusia. Keia mea paahana ua kapaia "Neovaskulgen", manao no ka iapaau ana o lalo, lala ischemia. I ka papa o ka iapaau ana me keia ka lapaʻauʻia, e loaʻa ma kahi o ekolu haneri tausani rubles.

Biotechnological lapaʻau nāna manaoio ana, hiki ke loaʻa ka loa pipiʻi ai 'i loko o ke ao nei kiʻi o a ma ka pauku ho'āpono iho. I ka mea, a hiki i ka Hekikai o kēia mau ai ', he nui kanaka e loaa ana mai ka mea pathologies, ua hikiʻole e pakele o ko lākou mau maʻi puʻuwai. Mea lāʻau lapaʻau poe i pono, e kūʻai lilo aku i kēia mau ai ', mai kā lākou mau hoʻolaha pāʻoihana eʻaʻole pono e pana aku au i ke kālā. I mau ai 'mea kokoke i Competition, i mau hiʻohiʻona nō Manufacturers ia lakou iho ho oholo i ka lilo ana o ka lāʻau a me kona loaʻa nui.

Ma kaʻAmelika Hui Pūʻia lapaʻau poe reimburse i ka lilo o ka pipiʻi ai 'ana i nā mea maʻi, a me kekahi mau Manufacturers kaumaha noa ka lapaʻauʻia nele.

Poe akamai a pau ma luna o ka honua, e ho'āpono aku i ka kiʻekiʻe lilo o hou ai '. E like me ia ia lakou, i ka hoʻohana 'ana o ia mau lapaʻauʻia ae he nui loa nā mea maʻi hapa' ia ', a ma kekahi mau hihia ola anei loa noho pakele o ka maʻi syndromes. Poe akamai i manaʻo i ke kumu kuai o kēia mau ai 'i ua hoʻemi, Competition ua pono. Wale i kekahi mau kanaka manao i ka poe i hōʻike 'maʻi kaumaha, a hiki ma ka kakahiaka nui elemakule, e olelo lealea e e hiki ke kūʻai ai', costing tausani. Ma ka hapanui o na, kanaka e mai i ka manawa kūpono e kuai ia pipiʻi lāʻau.